Faces of Rare

Who do you #ShowYourStripes for? Click on each photo to get to know the person behind it and share your own story and photo today. Alone, we are rare. Together, we are strong.

Dena for Raven

Raven was diagnosed with BLT syndrome and was hospitalized for 6 months. Our rare warrior!

Katie for Nora and Ben

My babies, you are TWO in a million! Keep shining!

Niki ivelic for Noah Ivelic

May we continue to find HOPE for treatment for our Malan Syndrome children 🌻

Traci Hardin for Myself

I have Acromegaly.

Gisela Victoria for Noah Maria Victoria

She was diagnosed with ultra-rare disorder Abetalipoprotienemia and other undiagnosed comorbidities. She is my beautiful 26-year-old poet and aspiring playwright.

Michelle for Our daughter ALLY

You're rare and tough like a diamond...so wear your strips proudly...Pfieffer syndrome, chairi and more!

Laura for My son Daxton

Daxton has Alternating Hemiplegia of Childhood. 1 in a million! So close to a cure!

Dana Holzhausen for Our daughter Chloe

Osteopathia Striata with Cranial Sclerosis and Complex Regional Pain Syndrome.

Kathy Jean Sandberg for My son, Cory Clark

Every minute is challenging when you have no short term memory!

Nilsa Vera Faraon for Myself! We are in this together!

Some days are good others bad but its great to have a community that understands.

Carolyn Whitacre for Myself I have Sarcoidosis

I have Sarcoidosis im rare it can affect every organ please read about Sarcoidosis

Liz for Liz

I show my stripes for myself and PTEN Hamartoma Tumor Syndrome Awareness Matters

Katie Arthur for Matthew, Branchio Oculo Facial Syndrome

So proud of my little rare warrior!

Jaclyn Fang for Hanna

My fearless and determined daughter navigating life with Periventricular nodular heterotopia (PVNH).

Katie Kowalski for My beautiful sister Kim

who bravely continues her journey living with Autoimmune Hepatitis

Breena klein for Gastroschisis

I had gastroschisis when I was born in 1984

Sheila K Ferguson for Brooke Costilla

Brooke from Oklahoma - diagnosed with Chromosome Ring14

KATHRYNE HART for UBA5 and specific antibody deficiency

On Rare Disease Day we Run4Raiden to raise funding to research treatments for UBA5.

Paula D'Arcangelo for Myself and anyone else who is living with a rare disease!

May we all come together and help each other find hope and support!

Maryann Maynard for My son Nolan

Nolan is 9 years old and suffers from a rare disease called erythromelalgia

Christine Kelly for Hodgkin's Lymphoma survivors

Rare is many and you are not alone!

Chelsea's Hope Lafora Children Research Fund for the Lafora Disease community

Our children fighting Lafora inspire us to work every day to reach a cure for the disease.

Daniel Torres for Emmelina Torres - Ehlers-Danlos syndrome (EDS)

EDS Warrior here to bring awareness To all the Different stripes. WE DAZZLE!!!

Dana Rowland for All of us living with Addison’s disease 🦋

We are warriors! ❤️

Cheryl A Rippa for Our amazing son Gary James

We are always so proud of you and to be your parents. ❤️

Dianna Campbell for Dianna Campbell Leiomyoma Sarcoma Survivor

Leiomyoma Sarcoma Cancer Pelvic Bone Stage IV Years Chemo Radiation. I survived even though I was told oy 3 months to live in 2004 with 4 trials & radiation. It takes drive & fighting for an excellent Medical Team giving back Educating People Rare Diseases as Patient Advocate.

Diana for Myself

I am fortunate to have my husband’s support in my MG journey.

Tammy Blake for To give others the courage

I share my personal experience about living with a rare disease to encourage others to do the same without fear of being judged. Yes I'm different, yes I'm unique but that's okay.

Jamie for My Family and I

More awareness, genetic testing at Birth to break the cycle!

Joan Powell for Get Busy Living

You have a choice in life. I choose to get busy living.❤️

Melanie Rodriguez for By His stripes I’m healed.

My stripes of pain, scars of surgery, and suffering will give praise, honor, and glory!

Kathy Colalillo for Myself and others with wAIHA

Raise awareness of warm Autoimmune Hemolytic Anemia and all rare diseases.

Elizabeth for Caitlyn

Interstitial lung disease and auto inflammatory disease

katie kowalski for My daughter Bailey (lichen sclerosus) and son-in law George (aplastic anemia)

We wear our strips for ALL the brave children, women and men living with rare and undiagnosed diseases.

Katie Taylor for FSGS and Transplant patients

Focal Segmental Glomerular Sclerosis - a rare Kidney disorder that scars the glomeruli that filters blood.

Hope D Dent for The Myasthenia gravis Community

Being rare helped me discover who I truly am & the meaning of gratitude.

Frank James Rivera for Sarcoidosis

I have a rare disease called Sarcoidosis. I am one of over 150k that has this terrible disease.

Krystal for Dallas for My son Dallas

Dallas is a Glanzmanns Thrombasthenia warrior!

Kristen Angell for Ken Angell, Pancreatic Cancer

In loving memory of my dad, my hero.

Kristen Angell for Stacy McCarroll, Cystic Fibrosis

In loving memory of my beloved cousin and best friend, Stacy!

Julie Manus for My Dad, the PLS warrior

I wear my stripes for my dad, who lives with Primary Lateral Sclerosis (PLS) and never gives up.

Nataf Dgani for Moya Moya Diseases

You possess the power to shape your life to a life you desire 3>

Victoria Judson for Hereditary Sensory Autonomic Neuropathy 4

I'm 24 and raising awareness for Hereditary Sensory Autonomic Neuropathy type IV

Lynn Julian for Dr Smallz, my Service Dog

Dr. Smallz is my medical alert, service dog and best friend for life!

Tonya Henry for Me and all disadvantaged or minority rare patients.

I'm a minority, woman and disabled vet. Rare disease affects all. I'm the face of rare.

Tytina Sanders-Bey for Vascular compression syndromes

Raising awareness for Nutcracker Syndrome, Pelvic Congestion Syndrome, May Thurner Syndrome, and other vascular compressions.

Lisa Facciolla for Hereditary Angioedema

On rare disease day we come together to advocate for a better future for all.

Arabella constant for Arabella is 15 months and has had 7 surgeries for Tetrology of Fallot. She was born with tof and duplication of chromosome 1, laryngomalatia, blocked tear duct

Tiny but mighty heart warrior

Brenda Fregger for Myself and all the Rare Warriors

Rare Disease Day is OUR day, let’s have fun creating Show Your Stripes photos!!

Cassandra Barber for Clayton

Clayton is 19 and has osteopathia striata with cranial sclerosis.

Shannah Hudson for My GA-1 Zebra, Emmalyn

I care about rare not only for my daughter but all rare zebras!

Tiffany Sammons for For my little zebra Rowan Archer

For my resilient Rowan, and all the other little ones fighting big battles. You're 1 in 10 million in more ways than one little man! "Alone we are rare, together we are strong."

Sean Roberts for Ray and Greg!

Love you guys!

Doreen Browdy for PVNH Periventricular Nodular Heterotopia

My beautiful daughter, Olivia has a rare neurological disorder called Periventricular Nodular Heterotopia

Kathy Colalillo for All of us that suffer.

Wearing my stripes proudly my fellow patients with warm Autoimmune Hemolytic Anemia

Kathryn McFadden for My husband, Joe.

For 13 years, my husband, Joe, bravely battled CRPS, a syndrome that left him in constant, severe pain. The pain from this disease is ranked off of the 1 to 10 pain scale. He was usually at 12 to 15. Battling the pain caused damage to his brain. He fought the pain and dementia for the last years of his life.

Julie Marie Sheleny for Pediatric Crohn's disease

My daughter inspired me to be a better mom each and every day!

Taylor Augustyn for my Mom!!!

My mom passed away extremely suddenly from HSE. I want to raise awareness for this rare disease and anyone else experience loss from it <3

ELIZABETH A ARLEDGE for Susac Syndrome

I wear my stripes for my beautiful daughter Elizabeth, who has been fiercely battling Susac Syndrome for several years, and to all the warriors out there fighting with her.

Kelly A Kiggins-Lund for Me

Living with Stiff Persons Disease Dermatomyositis CVID IIH - Keep persevering!

Deb Westwater for my AmAzInG daughter, Madison Austin

Proud of this lady for never giving up and fighting for her health and others

Lynn Julian for all who cannot speak up.

Advocating is the way to be the change you wish to see in the world!

Tonisha for Atypical Hemolytic Uremic Syndrome

I show my stripes for Atypical HUS fighting since 1995!

Bonnie Manzo for I show my striped for my family and I

I show my stripes in support of research for diseases we endure that currently have no cure and are progressive and chronic with each one having the ability to be very disabling.I support efforts for drugs to treat pain and slow progression.I support that there is a better understanding in the medical community so as to avoid long diagnosis times and ineffective treatment plans due to lack of knowledge about the condition. Small fiber neuropathy Neurofibromatosis Erythromelalgia POTS Dysautonomia Acquired Lipodystrophy Hyperacusis Mast Cell Activation Syndrome

Bonnie for My nephew born with HLHS, our families miracle child! I also where my own stripes for CVID, Adrenal Insufficiency and EPI (Exocrine Pancreatic Insufficiency) three rare ones!

Our family is wearing our stripes! Lincoln HlHS, Bonnie Common Variable immunodeficiency.

Rebecca Symbal for Emmett James

Emmett James you are so brave and strong! We love you and you’re “stripes”!

Francis Masterbone for For my love Stacie

Stacie 11-26-1966 to 01-01-2022. Always and Forever Rare Disease MELAS

Katie Walton for My son Joey with MLD

My Brave strong beautiful Joey and all the other MLD warriors!

Bob Brady for Rare Pituitary Disorders

I have panhypopituitarism, a rare condition affecting hormone secretion, I’m also an advocate

Kathy Sandberg for My son Cory

Wernicke Korsakof Syndrome as result of gastric sleeve! No short term memory.

Raina Fuentes for all Acanthamoeba Keratitis (AK) warriors!

One in a million is 1 too many. Contacts and water don’t mix!

Tara for My son, Joey, who has Galactosemia.

We show our stripes for Galactosemia.

Dawn Perry for My most amazing son, Liam!

This young man of ours is the epitome of what determination, strength & perseverance looks like on any given day!

Leesa for Primary Bilateral Macronodular Adrenal Hyperplasia

I have a mutation in my ARMC5 and it is genetic on my paternal side.

Leah for Brenda Lynn Smyda

I show my stripes for my mom who fought a tough battle against GIST cancer and for everyone diagnosed with this rare cancer ❤️

Wendy Dworski for Our daughter Gracie

Our daughter has Phenylketonuria “PKU” an inherited metabolic disorder. She amazes us every day!

Sabrina for Myself and everyone with a rare disease.

I show my stripes today and everyday. Stay strong!

Nicole Wheeler for My Hypophosphotasia and Narcolepsy Community

Lets make dreams come true…be seen, be heard & supported!

Renee Fortson for Granulomatosis with polyangiitis

I was diagnosed in 2013 and I was almost dead when my local Dr's sent me to Dr Ronald Falk and Dr Brent Senior in Chapel Hill NC. I had suffered for over 10 yrs but no one knew what was wrong with me. They saved my life. I've had 23 surgeries since 2007. I've got a wonderful team of Dr's. It's worth the 2 hour drive to go see them.

Brenda Fregger for All the Rare Disease Warriors!

We are a challenge to our medical teams, so I used today to also express gratitude each of them with a Hershey’s Hugs gift bag! Let the people in your life know how much you appreciate their love and support!

Janine Solley for Awesome Audrey

Your strength coping with Achalasia never ceases to amaze us. We love you.

Kelsey Cook for Russell Cook, my son.

Russell contracted a rare strand of Strep Pneumo bacterial meningitis at 6 months old. He fought it and won but has many battle scars and is changed forever.

Janine Solley for My husband, our Rock!

We are so proud of your strength and determination. Never give up.

The Teixeira Tsao Family for Mia for Citrin Deficiency

Our incredible daughter Mia with a relatively unknown and likely underdiagnosed condition - citrin deficiency

Andrew Barnett for Ang petersen Dermatomyositis warrior

I'm a caregiver for a Dermatomyositis patient & I care for the rare !

Janine Schrock for Reed William Schrock Hirschsprung, T-21

Hirschsprung disease takes a toll on parents and child. The beauty is that with T-21 a smile always follows!

Stephanie for Ollier Disease

Ollier disease is a skeletal disorder characterized by multiple enchondromas

Nikiesha for For myself and others.

Never give up! Always show your stripes.

Maite Robinson for Ana & all PMLD kids

To all PMLD kids who face life with a bright eyes and a bid smile on their faces...

Cynthia Lopez for Myself!

Having 3 rare diseases makes life a challenge but never dull!

Pamela A. Engel for rare disease Hypophosphotasia

NORD has assisted me in helping me to get my needed medicine to help control the effects of Hypophosphotasia. I appreciate this organization for the help they give to people who have been diagnosed with a rare disease.

Melissa Mesic Marshall for Myself! I’m a Zebra!

I suffer from 3 rare diseases. I show my stripes every day by showing up at all, like every zebra does, and I am proud of all of my fellow zebras today and every day!

Jennifer Leonard for Abigail and all FOXG1 warriors

I show my stripes for Abigail, and FOXG1 Syndrome!

Makenzie for Josiah Julious Cabrera, My son

Josiah has a rare deletion mutation of the NLRP3 gene, he is diagnosed with Familial Cold Autoinflammatory Disorder!

Sarah Testa for PKU

PKU STRONG

Rosie Kubik for ALL SURVIVOR AND AFM WARRIOR

The strongest 6 year old you will ever meet.

Francesca Torres for My son Noah

You are one of a kind!

Neil Smith for Kallmann syndrome

Hoping to raise awareness for my rare condition to help patients get earlier diagnosis and treatment.

Betsy Garber for Laityn Blank

We love Laityn and all the other warriors with STXBP1.

Erica Manchester for my son Cole

You are an inspiration Cole!

Chelsea for Lola

Our Angelman syndrome warrior

Coffin-Siris Syndrome Foundation for The CSS Community!

COFFIN-SIRIS SYNDROME COMMUNITY!! Dare To Be Rare!

Laura Roublick for My daughter, Nicole

My strong daughter and her fight against ALPS (auto immune lymphoproliferative syndrome)

Jessica Nordland for Maggie and Peter Dion

These are the faces of rare disease

Rachel Fiedler for Ethan & Eli

Ethan with Chiari Marlformatuon and EoE and Eli with EDS- you are so brave and strong!

Brian Hacker for Myself!

Working to be the Congenital Adrenal Hyperplasia Warrior for those who need to see it!

Angela Petersen for Dermatomyositis & to advocate for my community

Alone we are rare, together we are strong! To allmy myositis warriors keep on keeping on 💙

Christine Bernard for All those suffering in silence with CRPS & RSD.

Each day is a new day. And not all struggles are visible. Have care and compassion for others as you never know the silent battles, we all are facing.

Kay Waters for My grandson, Jackson

Jackson was diagnosed with Batten CLN3. He's still the strongest, sweetest boy I know!

Savannah Taylor for Mast Cell Disorders and Celiac Disease

Keep your head up and your friends close!

Joan D.Powell for Get Busy Living!

Remember a rare disease is not a life sentence.

Jennifer Sloan for Josephine

Josephine has both CDKL5 and Congenital Myotonic Muscular Dystrophy.

Alissa Russelburg for My son, Drake!

Bohring-Opitz Syndrome cannot steal the blessings Drake offers this world. We love you, Drake!

Maja Nelson for Nancy, Stephen, Betty Lou & Michelle

We are inspired by our friends living their lives with rare diseases!

Dorothy Peterson for VGXI supports rare disease day!

VGXI supports rare disease day!

Howard Silverman for (SCA 6)

I show my strips for Rare Disease Day!

Bret and Jessica Kling for Our son, Silas- Eosinophilic Esophagitis

Our brave and sweet little boy who amazes us everyday. Forever our EoE Warrior!

Christine Hart for Grant & Pierce LeHew

These two grandsons have Type 3 spinal muscular atrophy (rare muscular dystrophy disease)

Barbi Harrison for Charli

Diffuse Sclerosing variant papillary carcinoma of the Thyroid.

Dana Gallegos for Our son, Lennon, who has Fanconi anemia

Lennon is both a Fanconi anemia warrior and a bone marrow transplant survivor

Stephen McKinley for all people with HAM/TSP

A cure is out there!

Cindy Dellman for Oliver

Zebra rider is Oliver’s brother.

Buffy Nicole Bons for Myself and Paul Moen

I have ESS, on the severe side (diagnosed 2/15/16), Paul has CIDP. We fight daily.

Brandi Kelley for Barrett Baca

I wear my stripes for Barrett Michael who fought against a rare disease. He is now with God and whole. He smile and big brown eyes could light up a room.

Dori R Blacker for My MCS Family

One day we’ll get the care we deserve

Gina Gambosi for Lena

Lena is 1 in 1,000 known patients diagnosed with foxg1 syndrome worldwide. There is no cure but rather individuals impacted currently rely on available supportive therapies to help manage symptoms.

Alissa Warren for Happy Rare Disease Day 2023! Remember to NEVER underestimate anyone! As always, we are happy to discuss & answer questions about Alissa. #AwareShesRare #RareDiseaseDay2023 #02282023 #Rare #ShowYourStripes #iSACRA #AnythingISPossible #iSACRAStrong #Awareness #MyDaughterIsMyHero #SacralAgenesis #CaudalRegressionSyndrome #AlissaCAN #iSACRAPride #IThriveWithSA

Alissa thrives with CRS/SA! She’s soon to graduate high school and off to college. She’s a fantastic artist!

Brigitte W for New Daily Persistent Headache (NDPH)

Every day is still a gift. Keep moving forward. Nevertheless, she persisted!

Linda Middleton for Never give up!

Once I could not to walk to the refrigerator, now I can ride my bicycle!

Sue Meyer for Harper Rose

DBA.

Bela Gaytan for others: you're not alone!

With 4 rare diseases, I see you, I feel you, and I support you.

Mindy Willert for Dercums Disease MCAS EDHS

I am still living with hope everyday. Alone we are Rare. Together we are STRONG! https://globalgenes.org/blog/wrdd-2014-recap-nashua-woman-raising-awareness-with-rare-illness/

Adelphi Real World for The Rare Disease Community

Fundraising to help support individuals and families affected by rare diseases.

Jodi for Cushing’s Syndrome

Thank you for all you do regarding treatment for Subclinical Cushing’s Syndrome. I’m hong the new drug Recorlev will help to control my cortisol and I’m able to live a more healthy life soon!

Sarah O. for Our daughter Riley

We are so very proud of your strength and perseverance. We love you Riley Girl!

Leigh Lefaivre for Tommy

Many thanks to the countless professionals, friends and family who support us every day! Much love ❤️

Jose C for My daughter Natalie

She was diagnosed at the age of 3 with Autoimmune Hepatitis type 2

Dwight Hunt for A. L. S.

I am learning to maintain these qualities: Faith, Hope, and Love

Cathy Sheard for Kayleigh

In memory of John and Kerry's beautiful angel

Sarah Corsaro for L1 Cam Syndrome Awareness

This is one intense life changing journey, we cry & celebrate. I love you Maximus!

Dr Susan Flavin for All who battle rare diseases

As a member of the 2022 NYC “Running for Rare” marathon team, know that I support all of you! Alone you may be rare, but ALL of us together are strong!

James Hoyne for VACTERL

Never stop pursuing your dreams just because you have a rare condition

The Black Family from Pennsylvania for in memory of Alexander Black

Alex was a son, brother and friend who lived 22 years and was loved and was valued for his unique laugh, curiosity of life and great freckles. He was a rare soul who happened to have a Cornelia de Lange Syndrome, which afforded him the most beautiful eyelashes!

Penina for Our angel, Julia

Double Zebra. Pediatric Onset Multiple Sclerosis & Behçets vasculitis. 21 forever...

Kelly for My daughter, Imogene, who has Addison's Disease

So very proud of my girl who shows us perseverance everyday.

Stella Sullivan for NALCN Awareness

1370 nalcn.org brochures sent to help families advocate for CLIFAHDD IHPRF UNC80 in their communities.

Richelle C for Angelina H

Angel, thank you for opening my eyes about rare diseases. ✨️ Your resilience and advocacy are inspiring.

Steven Dzik for Dana Gordon

Beloved wife. Victim of Uterine carcinosarcoma.

Donna for HLRCC Warrior!

Showing my stripes (Striped Bass) to bring awareness to HRLCC on rare Disease day 2023.

Lori Lassen for Ashley - Caudal Regression Syndrome

A brave girl that shows how rare and special she is every day!

Suzanne Gonzalez for My son Alan Jose

The happiest boy I know with XXXXY syndrome, I love you forever.

Mandi Holliday for My son Keedon

GAMT diagnosed at age 12. Screen for creatine! #newbornscreeningchangeslives

Sofia Gonzalez Sanchez for Brillar inspirar agradecer luchar

Gracias a Dios por estos 7 meses de vida, por permitirme ser parte de esta gran comunidad Soy un gran milagritodevida

Staci Hershman for Mecp2-Related Disorders

Staying brave is the key

Marianna for La mia piccola Paola

Per la mia piccola bambina , affetta da mutazione del gene gabra5 , affinché in un futuro non molto lontano , possa qualcuno avviare una ricerca su questa rarissima mutazione genetica ....

Wittney Sadler for Children with MCOPS12!

I would like to help spread awareness about the rare neurological disease called MCOPS12 and to ask for SUPPORT to finance a therapy for MCOPS12 Kids!

Ezhilarasi for Takayasu's Arteritis

The days before and after my diagnosis have been a nightmare. But living with a rare disease continues to drive me to live in the present and live everyday to the fullest. Lots of love to all rare disease warriors!

Melanie Riva for Adara

Tuberous sclerosis will never defeat her cheerful spirit; God is continuously pouring out His healing power on her!

Tegan D Scroggs for myself and Indolent Systemic Mastocytosis

The last year has been life altering through diagnosis and trying to finding a treatment.

Meghan Hagen for My son Michael

My son Michael was diagnosed with KIDINS220 in 2017. He is 1 of 44 cases we know of in the world!

Sofía González Sánchez for Brillar, Agradecer, inspirar, luchar

Agradezco a Dios y ala virgen por llevar 7 meses de vida, por permitirme dar mi testimonio y ser un gran milagritodevida

Leah Santo for Peter and Maggie

We dedicate today to our precious nephew, Peter and niece, Maggie with LGMD2C. With unconditional love and support, Auntie Leah, Uncle Monkey, Cousins Mari, Jada and Zac. Xo

Brittany Benjamin for Brown Séquard Syndrome

I have lived with Brown Séquard Syndrome since 2014 that occurred during a laminectomy.

Lisa Gresczyk for Chiari malformation and Trigeminal neuralgia.

I fight for Chiari malformation and Trigeminal neuralgia. The daily strikes are debilitating!

Vivian Gonzalez for My daughter, Kayla.

Kayla was born with Noonan Syndrome. She is a warrior and my hero!

Ashley for My brave boy Riley

Who’s showed so much strength and resilience during diagnosis and treatment for agammaglobulinemia.

Rosa Grossi for Jennifer Grossi

Jennifer was a gift to all that met her. Her love continues to shine from heaven.

Valoree and Scott Duquette for Our son Grayson

We love someone rare. #hirschsprungsdisease

Phyllis Parr for MMN Multifocal Motor Neuropathy

For those who share MMN around the world 🙏

Alex Goonesinghe for Niko Goonesinghe

Niko, 6 years old Cornelia de Lange syndrome

Karen Elizabeth Beetow for Dermatomyositis

Be Your Own Advocate

Rita Sexton for Giant Cell Myocardias

I was diagnosed with Giant Cell Myocardias in July of 2022 that resulted in a heart transplant. This is for myself and all of my GMC warriors!

Molly Whitmire for my daughter Sarah "River."

A timely diagnosis of Wegener's Disease (granulomatosis with polyangiitis) would have saved her life.

Mary Ekhoff for Jaxon and Jameson

I wear my stripes for my 2 PKU boys Jaxon & Jameson

The Martine Family for Luke and all those with congenital central hypoventilation syndrome (CCHS)

Luke's light shines bright even when the night turns dark! #castalightoncchs www.cchsnetwork.org

Kelly Patrick for fighting rare cancers

I want to help allay the fear, anxiety, and questions when a diagnosis of cancer is delivered.

Jasna Rojs for Klippel Trenaunay syndrom

RARE DISEASE DAY

Amy Ferraro for Idiopathic Intercranial Hypertension and all who suffer from a rare disease.

We are not alone!!!!!

Stacy Goldberg for Our Mito angel Rina

Many Rare Many proud, Many strong. Let's change the path together

Katelyn Hansen for Lukas - Coffin Siris Syndrome

Lukas has been through so much in 2 years. He is tiny but mighty!

Kim Ordiway for Avascular Necrosis (AVN, Osteonecrosis)

Avascular Necrosis is a rare and painful bone disease that causes bone death.

Susan Nicole Yarbrough for CVID

Looking forward to one day living normal without ear pain, digestive issues with pain🙏

Jessica Nordland for Peter and Maggie Dion

To keep fighting and advocating everyday for kids like Peter and Maggie to have therapies to improve their disease.

Chandra Belle for Showing stripes for myself, my mom RIP 12/17/20 who died from this illness, my aunts who I lost to this illness, and my aunts who are still alive fighting this illness now.

Oculopharyngeal muscular dystrophy (OPMD)

Sue Reynolds for Maisie Warne, grandaughter with Cardiofasciocutaneous Syndrome

Maisie is amazing even in the face of adversity with her Cardiofasciocutaneous Syndrome and her Mummy, Daddy and 10 year old brother Arthur are amazing. We need to raise awareness in UK for CFC.

Ariel Smith for Congenital Sucrase Isomalatase Deficiency/ Gastroparesis

You have to remember the bright places and stay positive.

Cheryl Carlson for Women in underserved health markets

Disease isn't depression,hormones, aging, laziness. We matter even when abilities get impinged. Don't give up

Rachael Hollwey for Ehlers-Danlos Syndrome

Only you decide what is impossible.

Candace Friend Shelton for Logan Brinson

I'm showing my stripes to advocate for my deceased nephew, Logan Brinson and the 95% of rare disease patients that are still waiting for a therapeutic treatment. In my clinical research role, I need be creative to extend access for clinical research opportunities, remove the barriers for treatment and restore HOPE for patients and their families. Always remembering LOVE never fails!

Maddison Hall for my daughter, Eleanor

Eleanor has Glut1 Deficiency Syndrome and is rare in so many wonderful ways.

Maria Camacho for Carolina Gonzalez

I show my stripes on this day and forever for my niece Carolina Gonzalez. She suffered from PSC and died a year ago from it. She was only 32 years old. The bravest girl I knew. Keep on shining from above, your legacy does too, here on earth. I love you.

Andrea Harris for Joshua Harris Jr.

His smile brightens any day! His strength illuminates hope! His passion inspires good!

Sydney Alper for Chromosome 18q- proximal deletion

I love being a self advocate for my chromosome disorder! "I am Sydney and I am Unique!"

Lauren French for Mason, and our Smith-Kingsmore community!

To our tough boy Mason - you are the bravest, strongest, most resilient little boy and we are so proud to call you our son. We love you so very much! When it comes to rare disease, it is often the families directly impacted that are left with the burden to fundraise for needed research. Join us in supporting real change. Help us accelerate personalized, precision treatments for people diagnosed with Smith-Kingsmore Syndrome, and all rare diseases!

Rebecca Schroeder for my daughter, CDH survivor Lily!!!

Lily is a 4 year old ECMO and Congenital Diaphragmatic Hernia Survivor (CDH). She is small but mighty!

Joni Erlewein for Dermatomyositis

We are not invisible We are here we all matter

Kristen Brown for Zayla Novalee ❤️

Biliary Atresia, 1:2million

Melanie Baker for Phenylketonuria

Been tough living with my pku,lost my first baby before I realized I even had phenylketonuria ,when I learned ,boy did my life change!!!

Amber Pickett for My son Hunter

Hunter has 9 different rare diseases that he fights every single day. You’re amazing bub!

RIK for Double conditions from birth

The story of a Marfanite--named RiK Do you appreciate your health or do you take it for granted...Imagine being a helpless new baby beginning your life totally disabled with incredible challenges for your tiny body to handle, by RikXecom

Tiifany Sammons for My little superhero Rowan

"It only takes one voice at the right pitch to start an avalanche." So grateful for the army of advocates in the rare community moving mountains for kiddos like mine.

Tamara Schryver for The Pyruvate Kinase Deficiency Community!

Congratulations to the PK Deficiency Community celebrating 60 years as a rare disease!

Shundra Wooten for Shundra and Ataxia patients

My Rare Disease is SCA3. I want to advocate and make or voices heard.

Megan Robbins for Myself, family, and others with Cushing’s disease

My favorite quotes I go by is keep going, and trust the process. Since my pituitary surgery. I’ve kept going and trust the process. A year later and I will keep going. I will continue to trust the process.

Michelle Padilla for myself

I have 22q11. Its the second most common syndrome to Dow Syndrome I have had three open heart surgeries , two mouth surgeries, two sinus surgeries and one ear surgery. One grandma seizure at the age of 17 suffered brain damaged and was in a comma for about a week I was diagnosed inteually disability.. I have own podcast called The Awareness Show. You can find me on Itunes, and Iheart raido, Spotify, Pandora Amazon Prime. I am now working for the Department Of Conservation .

Elsie Del Monaco for Spinal Muscular Atrophy

My SMA does not define me for many reasons. Family, friends,purpose,hope,love.

Jennifer Ramirez for Self = Guillian-Barrè, Necrotizing Fasciitis with Pasturella Multocide

I'm "RARE."

Payal Patel for Rayna

Love you Rayna, there are no mountains Mamma is not willing to move for you!

Jeannette Campbell for My daughter KATIE

What a journey we've been on...my 1 in 50,000!

Kathryn McMullin for My daughter Lillian

Lillian has CCHS and she makes each day brighter than the one before

Bonita for My superhero son Janco

I wear my stripes to celebrate the journey my son has overcome so far with his rare genetic disease, Fanconi Anemia, but also know he still has a long journey ahead of him.

Stephanie for Myself and others with rare disabilities.

I’m celebrating rare disease day for myself and others with rare diseases and disabilities.

Emily Beauclair for My son, Joe!

Joe has Skraban-Deardorff Syndrome and is the bravest and happiest boy I know!

Kaitlin Johnston for My son, Liam.

To raise awareness, increase research, one day find a cure for epilepsy! #pachygyria

Mary Helen Carrillo for Kimberly Wylie Stiff Person Syndrome

Support Everyone with a Rare Disease. These are Special People.

Cheri for Me

To all those living with MPNs!

Joe Dreyfuss for Lauren Marie Jackson

Lauren has made my life better by knowing her. HSP Type 11 is may slow her down but she quickly made me fall for her.

MdDS Foundation for MdDS Warriors

Showing our stripes for Mal de Debarquement and all living with Rare Diseases.

Beth Bailey for My favorite zebras!

My heroes: Daughter with a benign childhood brain tumor and son with Creatine Transporter Deficiency.

Hank Chiuppi for All rare diseases and cures!

I volunteer for the Spastic Paraplegia Foundation. They raise money to give grants to researchers for two rare diseases Hereditary Spastic Paraplegia (HSP) and Primary Lateral Sclerosis (PLS) in hopes it will lead to cures for both diseases.

Cyndi for My beautiful granddaughter Lavonna

Lavonna has CDKL5, a rare genetic disorder that causes seizures and developmental delays

Laura Palmer for My son, Nolan

I love you, buddy! You're my hero and have made me a far better person than I was before.

Shelley Bowen for I show my stripes for Evan

For my son who died too soon from Barth syndrome.

Valerie June Bondarenko for Hidradenitis Suppurativa and Trigeminal Neuralgia

Dedicated to all of my fellow HS & TN Warriors - stay strong everyone!

Alysha Applebaum for Ilana with KCNA2 Epileptic Encephalopathy

Ilana was diagnosed with KCNA2 which causes her to have epilepsy, autism, ataxia, hypotonia and a developmental delay. KCNA2 is an extremely rare spectrum disorder which causes a wide variety of symptoms and severities.

Jeron Hill for Hemophilia B organization

I am a advocate for the hemophilia community hemophilia is a blood disorder where your blood doesn't clot normally My experience with the generation ix project advocacy trip was one of love and empowering because we all are bettering ourselves to become great advocate for the bleeding disorder community as a whole

Jenn Franco for My oldest daughter Alaina Franco with AHC

Alternating Hemiplegia of Childhood (AHC)-a lifelong debilitating and cruel neurological disorder that robs our kids of so much. We are desperately seeking therapies and a cure!

Martin Jaeger for Emma and Abby Gillaspie

Technologies pioneered for the rare few will lead the way to cures for the many

Sara Hunt for My beautiful mom

Forever grateful for all our adventures. #cancersucks

Shanette Bales -Wanke for CRPS Type 2

I have CRPS 2 and fight it everyday.

Lauren McCall for My daughter Reagan!

Ultra-rare overgrowth syndrome, Cohen-Gibson Syndrome. Prayers for more research, information and community. #1inabillion

Desiree Lyon for acute intermittent porphyria

Dare to Share You're Rare

Cheryl Long for Gemma Marie Arnold

My precious granddaughter battling Hereditary Spherocytosis..What a brave little one ❤️

Cynthia Swanson for My son Eric

Eric has Langerhans Cell Histiocytosis. After 3.5 years of chemotherapy, he is NAD. (No active Disease)

Sherry Fishman for Lani Dangler

Lani suffers from a rare disease called KLA.. Kaposiform lymphangiomatosis discovered after her liver transplant.

Jeron Hill for Hemophilia B

I show my stripes for the bleeding disorder community as a whole and for me and my mom and uncle and family

Marleen Bévort - de Roode for RYR-1 congenital myopathy

For all the people who suffer from RYR-1 related myopathy.

Kristin Kopp for My son and PKU

While we continue to advocate for the MNEA we remain PKU strong!

Kara Kilgannon for my amazing son Sebastian

Sending all my love to Sebastian and other ataxia warriors. Keep fighting! You got this!

Kelsey Lampe for My daughter, Lacey

We will fight this

Janet Armstrong for Mycosis fungoides

February 8, 1941 - February 20, 2019 Missed dearly every day ❤️

Mark Spence for my wife, Stacie Spence

She is a rare disease warrior that battles against painful cervical dystonia.

Dante Burgess for Bryson L. Burgess

My always smiling Bryson diagnosed with Congenital Muscular Dystrophy> Muscle Eye Brain Disease

Libby Willson for Me

After being diagnosed with primary immunodeficiency…I could no longer run Ironman triathlon but my dog sports are now my life!

Joyce Fitz for Myself, shwachman Diamond Syndrome fighter

Fight until the fight is resolved. Spread positivity and awareness with stripes and serenity .

Jeyren Arian Marin Ruiz for me and others HHT patients

Thanks Dr Wilfredo De Jesus Rojas, Dra Enid Rivera, Dr Francisco Diaz Sotomayor from Puerto Rico for give me hope.

Debra Dail for My Family!

Remaining positive and hopeful that cures are around the corner for ALL OF US with WM and other diseases! Keep fighting and be a light!

Alexandra Folleco for My older sister Daniella Folleco

I show my stripes for my sister Daniella, who passed away from osteosarcoma in 2007. She was an advocate for all pediatric patients at Joe DiMaggio Children's Hospital and touched our lives forever.

Elizabeth Husband for Idiopathic Intracranial Hypertension

Idiopathic Intracranial Hypertension is a rare neurological condition that mimics a brain tumor but there is no tumor. There’s no known cause and no cure, but it is a lifetime battle that I never wish on anyone. January of 2018 I learned my brain herniated through my skull after years and years of headaches. I was diagnosed with a rare skull defect called a Meningoencephalocele. Until this moment I had been misdiagnosed as having a migraine disorder and was dismissed when my imaging was questioned by multiple doctors for over a year. It took me being my own advocate and bringing my imaging to Boston to finally get the answers I needed. February of 2019 I went in for surgery to have my skull repaired, polyps and a cyst removed from my sinuses, and to fix my deviated septum. It was a four hour procedure and thankfully it was successful but it was also the moment my life changed forever. The morning after surgery I woke up to the doctor breaking the news to me that I had a rare neurological disease that has no cure called Idiopathic Intracranial Hypertension. He let me know I would be on medication for the rest of my life or would need further surgery down the line. In that moment I thought how I was only in my 20’s so the rest of my life is hopefully many years. Being on a medication forever felt so set in stone. Following this news I really didn’t tell the people in my life. I was quiet about what was going on. I was dealing with wrapping my own head around it. Still to this day I’m in denial about how serious this condition is. Many of us IIH patients know that going blind or having a stroke are two big complications with our condition. I use humor to get through the difficult times. Laughter after all is the best medicine. Fast forward to November 2021 and I was informed my medication was no longer working. My eye sight was changing and I had a drastic change to my previous surgical site. I was going to have brain surgery in four weeks. This was a time in my life that really shook me. I had people in my life who were very supportive and some who didn’t know what to say. I spent the weeks following learning what true strength really is. The things you learn going through vp shunt surgery recovery are priceless… VP Shunt surgery is real brain surgery. Your abdomen will hurt most of all since you legit just had your entire body pierced with a foreign object. You won’t stop touching the shunt and tubing because you are adjusting to this new body. The hair cut you will have will be a fun one. Many odd hair days are ahead! You truly learn who is by your side in life because they will be by your side through recovery. You learn your memory won’t ever be as sharp as it once was. Brain fog was real before but now it happens more often. Somedays you will forget simple things and you will be so mad at yourself. But at the end of the day you will learn you are so much stronger than you ever knew. April of 2022 was when I started to have issues with my shunt. I had two days of headaches and my stomach started to feel like it was full when it wasn’t. I ended up needing to have emergency surgery the following day to have my entire shunt removed and I had a PICC line for two weeks with antibiotics around the clock. I learned to administer my own medication and how to flush the line. I learned more than I ever wanted to! August of 2022 I had my second shunt placed and so far I have had great success. I get scared when I have a bad day because it brings me back to when it was infected, but I also have come to realize this disease doesn’t go away. No matter what treatment route I go I will never be “cured”. To those of you battling IIH I recommend joining support groups. You will learn this condition impacts so much of your health and fellow patients are great resources to understanding where to start. I recommend joining research studies and being part of the cure so no one has to walk in our shoes. I am happy to be part of research at multiple hospitals in Boston. To those of you reading this feeling bad for me I beg you to not. I don’t tell my story for pity, but I do tell it to raise awareness. If this reaches one person who didn’t know what IIH was then we are moving in a forward direction.

Kristin Anderson for My ultra rare son, Jacob!

I show my stripes for my son, Jacob, and others with ATP6V1A encephalopathy.

Hailea Carter for Our sweet daughter Bella Carter

we celebrate our daughter Bella on rare disease day — TNRC6B + Autism 💛

Daniela Berrettarossa for Recordar y recordarme seguir adelante.

Por la incertidumbre, por el miedo, por el dolor, por el alivio, seguir buscando, siempre.

Jhamira Willis for Idiopathic Intracranial Hypertension

Living with a rare brain disease does not have to mean the end to a normal life! :)

Nicole M Ivelic for Noah

Always face the sun, that's what sunflowers do!

Lori Houston for Samantha Houston

Relentless in the fight Always looking for more information Requesting additional research Everyone deserves a diagnosis 22Q11.21ds Digeorge Syndrome

Cassandra Haddad for My genetic ALS family

My family has lost 33 loved ones to SOD1 ALS. We must end ALS.

Dante Burgess for Bryson L. Burgess

My sweet always smiling son Bryson. Member of a rare condition: Congenital Muscular Dystrophy (Muscle Eye Brain Disease).

Darcy Lynn Hocker for Catastrophic Antiphospholipid Syndrome

I'm one of 289 ever diagnosed. Spontaneous. No impact, injury or infection. Prothrombin Thrombosis. C&S protein deficiency. Non lupus.

patty Keating for All Hypoparathyroidism Patients Worldwide

As Chair for HPA my goal is to bring awareness and education to patients and physicians to live our best life

Kimberly Otjen for Achalasia warriors

I have a rare swallowing disorder but I will fight every day.

Mandy for Allan-Herndon Dudley Syndrome (MCT8)

I wear my stripes for all the boys (and girls) like our son, Cuyler, who battle Allan-Herndon Dudley Syndrome, an ultra-rare genetic neurological disorder.

Shannon Killebrew for Myself, Shannon Killebrew, as I advocate.

I advocate through Shannon's Hope for House Calls and Home Medical Care. Accessible in home medical care should not be so rare!

Jamie Buechler for My beautiful son Eli

I raise awareness on rare disease day as this day goes so unnoticed by the world. How will you show your support?

Coleen Lambert for Mason Lambert

An amazing young man and warrior living with Klippel Trenaunay syndrome since birth!

Rachel O’Grady for To show my Resilience

If you are a Rare Disease and/or disorder warrior you are not alone. You are strong.

Tiffany O'Grady for Acute Disseminated Encephalomyelitis

My Daughter Victoria and my granddaughter Maryclaire!

PRISMS, Inc. for The Smith-Magenis Syndrome Community

Celebrating 30 years of inspiring, engaging, and supporting the Smith-Magenis Syndrome community. We care about Rare!

Jocelyn Paige Melnyk for Emily Anaya Melnyk

Let's raise awareness for our little Legg Calve Perthes warrior & her AWESOME care & support team. #nooneleftbehind #leggcalveperthesdisease

Jessica Henderson for Autosomal Dominant Dystonia 25

Fought for years for a correct diagnosis, genetic testing, and now for a treatment plan.

Caryl Harris for Avery

I show my stripes for Avery, living with Microvillus Inclusion Disease. 💜

Whitney Belle Riley for Lou Riley

Lou has KBG syndrome and she is amazing!

Laura Kaup for For Carpenter Syndrome.

A rare disorder that I was born with and continue to fight for daily.

Meghan Newell Davis for Scleroderma Warriors

HSCT Saved my life...Keep Fighting...Scleroderma wont win!

Elizabeth Malament for I show my stripes for my son and for all the children born with Congenital Hyperinsulinism.

I show my stripes for all the children born with Congenital Hyperinsulinism and for their families who fight every day for them to be happy and have a healthy life.

Vanessa Werner for My son Damon

DJ fights every day after 2 cord blood transplants to treat Infantile Krabbe Disease

Whitley Bryant for Laila Wilson AHC WARRIOR

May life continue to bless you with more the love courage excitement fun then you can ever imagine we love you!

Beth Kenyon for Orthostatic tremors

I want to advocate for others like me it took 3 years to get a diagnosis because many in the medical community are unaware of OT

Linda Ann Mendenhall for Mt warrior self seeking care with resilience and thanks

Thanks for cutting edge resaerch

Angela Elerick-Graves for Gavin is our Joubert Syndrome Warrior

I show my stripes for my son Gavin a rare disease warrior with Joubert Syndrome as well as all the other rare disease warriors. Peace, Love, Cure 🙏🏻

Vanessa Planamento for My daughter Antonia

Her strength being born with IA and Bladder Exstrophy is awe inspiring

Alejandra Watson for Pyruvate Kinase Deficiency

Thank you, NORD for all you do for patients with Rare Diseases and for promoting awareness.

Jenifer for Bilateral Adrenal Gland Tumors

For anyone out there struggling, please know you’re not alone!

Willow Stone for myself

Wandenstrom Macrglbilunemia and Marginal Zone Lymphomas

Christelle Nidercorn for Hypoparathyroidie

Beaucoup de symptômes invisibles hormis celui-ci

Sara McHale for Myself and friends and family with rare diseases

I have several rare diseases. Some I was born with while others I acquired along the way through life.

Melinda Richard for My son Zachary. He was diagnosed at 14 y.o. with Friedreich's Ataxia on March 9, 2020. Zachary started showing symptoms at the age of 11 and it took almost 3 years to get a diagnosis.

My son, Zachary, was a healthy boy and was working on getting is black belt in Takwondo. When he 11 years old we started noticing that Zachary was having trouble with balance and starting falling a lot. We brought him to his Pediatrician for a physical exam. He noticed that Zachary had no reflexes. He referred us to a Pediatric Neurologist. He was great, but told us that this was not his expertise. He referred us to a Pediatric Neuromuscular Doctor. He's an amazing doctor and started running tests immediately. It took almost 3 years to get Zachary's diagnosis of Friedreich’s Araxia. We had never heard of it. I started researching it immediately. I found FARA and immediately got my son enrolled in a trial. That was almost 3 years ago and my son just completed his first trial and is now in the open extension part of the trial. I am so proud of him, as we have to travel to Philadelphia from Louisiana, which is hard on Zachary. He doesn't complain and keeps a positive attitude!!!

Darcy Flynn for Thomas

We show our stripes for our little guy, Thomas. Thomas is the 19th person diagnosed with NFIB.

Gordana L Stefanovska for My son with CVID, CTlA4 del.

I hope that we have his medicine soon 🙏

Nickky Wise Neff for Kelleigh Angel Elaine Wise

I show my stripes for my amazing daughter, Kelleigh. She is loved beyond belief!!

Katarina Nelson for Wesley

I show my stripes for my son who has a rare disease and is my whole world.

Leslie Edwin for the global Cushing's community

Nonspecific symptoms still delay diagnosis and cause long-term damage. Time for patient-created research!

Janna bogle for I believe they should be able to help these children anyway possible with out it being a berdon on the parents and care giviers

This is Jayden age 5 his muscle are week and has trouble keeping up walk on toes and now with a limp if it wasn't for early testing it could be worse now we try are best to do therpys

Zeena Salwa for Helping babies with rare diseases

Rare diseases needs more time for diagnosis and sometimes remain in dark. We need to create more awareness, research and provide support to these group of children.

Patti Tilford for Stacy McCarroll

My sister Stacy lived with Cystic Fibrosis for 46 years despite her diagnosis in 1974 and life expectancy of 18 years. Thanks to research and advocacy she survived 2.5 times that🙏💗

Flor & Steve Cole for Our son Hayden

Hayden continues showing us what resilience and strength looks like, his is diagnosis of GSD-0

Tonya Hayes for Congenital Cholesteatoma for Aiyana

Cholesteatoma can be removed and regrow. It is dangerous and often misdiagnosed. Please help.

Alexandra Fulton for Thoracic outlet syndrome

I show my stripes for thoracic outlet syndrome and all rare disease. Hope for a cure 🙏

Judith Auslander for Sheehan's

I have lived with Sheehan's for nearly 49 years!

Angela Mitchell for My beautiful daughter

She is my zebra. She teaches me that no matter what she is always strong

The Breedloves for Ralph Bowers— Dedifferentiated liposarcoma

Ralph, we love you. We are right beside you as you fights this.

Sarah Buchholz for Congenital Adrenal Hyperplasia

Raising awareness for CAH children all around the world! Vivian Buchholz - DSM, IA

Ryann Henning for those with CVS & Hypokalemia

Living, surviving every day, being there for my children & students. Not easy, but worth it.

Anul Haque for Care of Rare

I am Rare handle me with care.

Richelle Wissink for A CHAMP1on, my son

Our son has a rare disease called Champ1. Go to www.Champ1foundation.org to learn more.

Shaun for Ensuring others thrive our desire!

We work to ensue all follow the motto: Believe Achieve Receive Success like and or better than Mr. Best!

Tara for My twins. Irelynd and Kyllian.

Diagnosed with Juvenile haemochromatosis at 8 years old.

Serenity Speaks for Myself and my Dad

I won't allow myself to be depressed or defeated by my conditions. My father fought until his last breath and so will I. Ase' Hotep

Rebecca Lauber for Myself (APS-1) and all patients!

Supporting and educating others so that we can help and uplift those in need.

Lora-Ellen McKinney for Vascular Ehlers-Danlos Syndrome

I claim, celebrate, suffer through and manage my rare disorders. May my life inspire others.

Alice Cregan for I show my stripes for my beautiful daughter Isla-Rose, she was born with CDG but only diagnosed at 16 and a half weeks old. She is a truly happy and amazing baby & shows so much bravery regardless of what she has already been through already.

My beautiful daughter Isla-Rose, she was born with CDG but only diagnosed at 16 and a half weeks old. She is a truly happy and amazing baby & shows so much bravery regardless of what she has already been through already.

Merissa Mercado for Gastroparesis and pineal cyst

I represent gastroparesis and the pineal gland cyst land of the unknown!!!

Lizz Boraczek for Isabella B

Bella has not let her recent diagnosis (<2 months) of Juvenille Dermatomyositis hold her back from her competitive gymnastics! Her grit and determination are beyond impressive!

James R Hoyne for VATER

I want people to know their ability is greater than their disability

Jennifer for My son Rowan

Living with SPG47, but overcoming so much!

Maria L Franceschini for Hirschsprung's Disease

I'm strong,I can do this and I will NEVER give up.

Dr. Michelle Stevens for I’m amazed by my daughter’s resilience and persistence no matter what comes her way!

I’m amazed at my daughter’s resilience and persistence at all times!

April Stephens for My amazing son, Micaiah!

I love you, little guy. You're a trooper. Cystic Fibrosis is no fun but you handle it like a champ!

Veronica Verdin for Trisha Carmona

Always a motivation to see your happiness & positive attitude and making changes to help yourself.

William Seery for Bill Seery

This is my Transverse Myelitus tattoo. I am partially paralyzed in my legs but I had worked with my local legislators office in creating Suffolk County TM Awareness Day.

Elizabeth for Abigail Villarreal

She’s an individual with the rare disease PKU and an advocate for the rare disease community. Through her platform, Be Rare, her mission is to bring awareness to the rare disease community and encourage the youth to accept and be proud of what makes them rare and unique.

Denise Hardeman for Sickle Cell Disease

I have full blown sickle cell disease and for years I have struggled with this disease and thankful for NORD ....

Cheri L. GryskevichDO for Kidney dx, 1’pmyself

I show my stripes for research and how I come off of dialysis by nutrition , immunotherapy, exercise and continue to study all rare dx

Melissa Jergenson for my son, Liam

Supporting all the amazing KIF1A/KAND warriors around the world!

Maggie Luoma for My sweet girl Haddie

I show my stripes for Haddie, she was born with Heterotaxy, but that doesn't stop her. She lives her life to the fullest.

Erin Dixon for Anyone with a myeloproliferative neoplasm

Faithful healing to all hurting around the world.

Malia Walters for My son Axl

Axl has Wolmans Disease. Keep fighting and amazing everyone, we love you!

Miriam for raising awareness for inclusivity in life!

My brother and I are both diagnosed with LGMD2B which will weaken our bodies over time. I want to raise a voice for those disabled community members who still want to live an active lifestyle and participate in life not just watch from the sidelines.

The Maughansters for Bug

We wear our colors for Bug and his KBG syndrome family! #KBGfdn

Sandra Martin for My daughter, Chelsea Flood

Our daughter Chelsea who has Polycythemia vera and portal vein thrombosis.

Sharon Franks for Dystonia

I’ve learned to live with the pain of Dystonia, but stay optimistic for a cure.

Lauren Flickinger for My daughter Olive

Nano-rare but together we are strong!

Emily burgess for Beckett my son

O’ Donnell Luria Rodan syndrome

Vanessa Gomez for My daughter Adelyn Rodriguez

My daughter adelyn was born with a rare disease called sever combined immunodeficiency (SCID). She has shown me how strong she is with her journey two far! She wears her stripes 🦓

Laura Rocha for My amazing son Marcus! (LCHADD)

Mom, Dad and brother love you so much! You make us proud! Continue to kick LCHADs butt!!

Deana Simpson for Mom - Genetic CJD

My family is impacted with the genetic mutation for Creutzfeldt-Jacob Disease (CJD). We have lost 22+ family members. I miss all those who have passed in my lifetime - I pray for all families impacted by this fatal and devastating disease and for a treatment or cure. Love and miss you mom!♥️

Katie Arthur for My son Matthew

I show my stripes for my strong, brave Branchi Oculo Facial Syndrome warrior!

Barbara Wolf for My grandson, Caden!

Please support research for a cure for CTNNB1 syndrome!

Cheri Cisman for Alivia Jude

Dravet Syndrome 8/12/14-5/18/15 Rest in peace, my angel baby.

Paul Heer for Living with mito

Rare is always better than being like everything else..

Jennifer for My daughter who battles CLN1.

Amelia battles Batten Disease and all of its terrible symptoms with so much courage!

Kimberly for Myself

I’m Kimberly I’m 26 years old. I have scleroderma Raynauds and APS

Strong Tila for gastroparesis

i won't give up

Michael M Patterson for Christy Lee Patterson

My wife fights CAD everyday. She's a true warrior. And a great mom.

April Lanord for Myhre Syndrome

Myhre Syndrome has only a couple of hundred diagnosed people in the world. My son went 14 years without a diagnosis because of how rare Myhre Syndrome is. Rare disease day can help spread awareness for the necessary research for Myhre Syndrome. Thankfully the Myhre Syndrome Foundation has been created to help with awareness as well.

Samantha Kvinlaug for Ivan Kvinlaug

Hereditary Spherocytosis Pediatric Mastocytosis My goofy little dude!

JC M. for Erythromelalgia

You're not alone.

Jules for Primary orthostatic tremor

We need more research and knowledge of Primary orthostatic tremor.

Megan Keele for My son, Owen

Happy rare disease day to my hirschsprung warrior! We love you, Owen!

Carolyn Whitacre for Myself and my Sarcoidosis Family

I Have Sarcoidosis I am a Rare Disease Warrior I support us all

Jeremy Williams for My daughter, Ezra Marie

Ezra has CDKL5 and we pray everyday for a cure!

Angie LaBorde for My sweet daughter nicknamed Squishy

Mitochondrial Disease. Mutation of the CYTB gene consistent with Complex 3.

Tytina for Renal Nutcracker Syndrome Awareness

Raising awareness for vascular compression disorders because a lot of health care providers have no idea that they even exist.

Madison Donahue for My daughter Emily 6 months old

Pradar-Willi Syndrome is our new normal. The weak cry, the late learning, and the constant struggle to gain weight!

Sara shepard for Myself

In 2016 I was diagnosed with Lupus and all the hurdles that brings. Earlier this year I was diagnosed with antiphospholipid syndrome after having a pulmonary embolism in December of 2022. I am 1 in 100000.

Elizabeth for Myself

Been living with scleroderma and other overlapping conditions for over 10 years now.

Lauren McDermott for Stiff Person Syndrome (SPS)

Hoping to find the cause and a cure for SPS. Let's end chronic pain!

Vanessa Inger for Familial adenomatous polyposis

Wearing my stripes for myself & my 3 (4 total) children who also have Familial adenomatous polyposis.

Chelsea's Hope Lafora Children Research Fund for the Lafora disease community

We hope for the day a Lafora patient can be told, "there's a cure."

Rakshit Aggarwal for Rakshit ASPS fighter

ASPS is one rarest kind of sarcoma, only early diagnosis is key to survival, due to poor diagnosis Asps spread in his lungs, brain, muscle and bone already.

Jan for My daughter, Allie.

Allie has Neurofibromatosis and she is such a strong and amazing person!

Kelsey Nelson for Silas Richard Nelson

Silas was born with Hirschsprung’s but continues to be a constant, smiling light in my life.

Rachel Alves for My reason why, Audrey Jo

Audrey Jo- CASK Gene Disorder rare beauty #KickingCASK every day!

Pam for My Hero Husband John

Battling TTP, ORN and Autoimmune Encephalitis - The Strongest Man I Know. You goth this, Babe!

Sandra Asselin for In Memory of My Mom

My mom, diagnosed in 1984 with Scleroderma, died on August 27, 1989

Joan Powell for My MDS Family

Remember our disease is not a prison sentence. MDS Family " Get Busy Living."

Elisabeth Fluger for Mevalonate Kinase Deficiency (MKD)

My daughter was diagnosed at 2. It's going to be a long and wonderful journey.

Christopher Velona for My Son Sebastian #projectsebastian

On this rare disease day, I support my son, Sebastian, and all rare disease families!

Mandy Keel for My beautiful son, Silas

Our son is rare and such a gift.

Jennifer Jepson for Abby 6 years, ITP

Abby is my youngest daughter, she wants to be a police officer when she grows up. She’s been so brave, I couldn’t be prouder. She was diagnosed with ITP the week of Christmas, and we are still trying to figure out what else is going on

Whitney Maltaner for MMIHS

Hello! This is Vivian she’s 19 months old and has MMIHS! She’s amazes us daily with how strong she is everyday with this rare disease!

Nakisha for People with Holt-Oram Syndrome like myself

I am a second generation recipient of Holt-Oram syndrome and I am so proud to show my stripes for the world to see!

Melissa Fox for 5 1/2 years withPeritoneal Mesotheliomia

I have survived 51/2 yrs with Peritoneal Mesothilioma which is in the lining of my stomach. It is life-ending but I’ve lived longer than most! More research!!!

Rebecca fox for Jordan Boggs

Jordan jr has neutropenia, cohen syndrome, retinal dystrophy

Heather Menzel for My beautiful strong daughter Mckinley

I would like dedicate this to my daughter Mckinley. Who was diagnosed with an ABC

Ofelia Rodriguez Nievas for Alvaro

Alvaro [27] fought against Gorham Stout disease, with body and soul. Hoping no one else will suffer it

Susan Krug for Hypophosphatasia

I'm sharing to bring awareness to Low Alkaline Phosphatase It Matters to get our Rare Voices heard all at once..

Jana A. Monaco for Stephen & Caroline with Isovaleric Acidemia

My children represent the importance of newborn screening & how early detection can forever impact life.

Donna Hutcheson for Kade Lott Noonan syndrome SOS1

Kade Lott Noonan syndrome SOS1 DOB 2/23/2023

Adrienne Hoffmann for my beautiful daughter Stella

Stella is 8 years old. She is funny, bright, loving, strong and the warrior of our family!

Debbie Drell for My big sister Alex

My bestfriend, my sweet sister, I love you Alex! I'm so glad you're doing okay.

Kristen Angell for My dad, Ken Angell

Forever my hero!

Kristen Angell for My cousin & best friend Stacy

In loving memory, you were and always will be my inspiration!

Dee Porter for I have 5 rare disorders.

I have 5 rare disorders. Nord has been a huge aid in me getting the help I need, but I still struggle with doctors. It has been over 30 tears since I was diagnosed, and I still fight.

Gina Henry for My Grandaughter Adalynn

Praying for my granddaughter Adalynn, who is receiving treatment in Boston/Worcester for Tay-Sachs Disease.

Jenny Coffey for Tamoxifen Retinopathy SFN CRPS Awareness

I show my stripes for Tamoxifen Retinopathy, Small Fiber Neuropathy, and Complex Regional Pain Syndrome.

Ali for For elispy walk and stuff

Elispy needs to be addressed more

Martha King for My Granddaughter Sophie

Sophie has Williams Syndrome and is a joy to her family!

Amanda for Asher Lennon Lion

Asher is fighting Spinal Muscular Atrophy (SMA).

Victoria Arreola for Sprengal’s Deformity, Klipple Feil Syndrome and Pectus Excavatum.

We are stronger together

Ana acuna for For my son brave george

I dedicate this to my brave and strong son who’s been fighting this debilitating affliction for years now .

Gracie for My son Damian

He’s one of a kind! GET-4 CDG

Shannon Bootj for Lachlan Booth

Lachlan was diagnosed with SETD5, a rare genetic syndrome. Less than 500 cases worldwide.

Amber Hubbell for Palmer E. Hubbell

Keep workin, Pig! We love you 💜

Laquitta Sanders for Kamiyah has UGDH but we will continue to advocate for our babygirl…..

We love you and going to always fight for your life….

@AutyZebra for Ruth, Soph, Lauren, Hannah, Elijah

For your continued battles against all of your chronic illnesses whilst still caring about others.

April & Mike Curran for Our daughter Kadance

Our 16 year old daughter Kadance who has been battling many rare diseases! This past year has been especially rough for her emotionally, physically and mentally and we just want her to know that we are all here for her and we love her so very much ❤️

Maryann Maynard for My son Nolan

Nolan is 8 years old fighting numerous medical conditions including a rare disease called erythromelalgia

Angie LaBorde for Undiagnosed Disease Network

We’re rocking the Zebra Awareness Ribbon for 100 Days of School Celebration!

Christine Redshaw for Alpha-1 Antitrypsin Deficiency Awareness

I have lung and liver disease due to Alpha-1 and pray we find a cure soon!

Lisa Lacroce Patterson for My daughter Audrey Patterson

Wishing strength and love to all individuals struggling with rare disorders and their families.

Ashlea for Open SMAS surgery post op day 4!

I am not too rare to care and share! I want to spread awareness to rare diseases and make sure others do not have to be gaslighted and suffer for so long!

Marissa Greenway for Rare Critical CHD Warrior Madelyn

Madelyn has Rare Critical CHD’s, and has survived 6 Heart Surgeries so far.

Bill Grabbe for For my wife Cheri Grabbe

My wife is battling Myleofibrosis and Gastroparesis. She continues to teach and inspire her kids. She is an amazing woman who encourages everyone around her to live their best life.

Amanda harvey for My son Kaiden Daley

Dedicate to my amazing little boy who hasn't had it easy with this disease and is a brave amazing sweet polite solider loved so much x

Brenen&Sadie Burd for Myotonic dystrophy type 1

Thank you for supporting rare diseases day

Gracelyn Green for Jmml

Jmml is a very rare cancer of the blood and can not be cured by chemotherapy...the only cure is a stem cell transplant

Sadie for Myself and My Caregiving Mother

HAE type3, FND, PANDAS, and PBC. Thank you mom, I wouldn’t be here without you

Angie LaBorde for MAND MBD5 Gene Deletion

My sweet Alexandra who we affectionately call “Squishy” is rocking this Rare Disease life. ❤️

Emily Smith for My brilliant son August

In hopes of finding a cure for DESSH. May you keep sharing that infectious smile with the world, my sweet boy.

Claire Newton for Dercums disease

I'm looking for better treatments and support for my dercums

Shekita Green for Neuromyelitis Optica

Rare is Mighty. Rare is Strong. Rare is ME.

Terri Chmielewski for Dercum's Disease

I support anyone living with a rare disease, especially the undiagnosed.

Nats for Neutropenia Sufferers

May those not getting treatment for their Rare Disease be heard!

Katy Conway for my fellow Addison's Disease patients

Here's to living your life, in spite of your rare disease.

Doris Piver for Lambert-Eaton Myasthenic Syndrome

The rare disease I have takes about 5 years to get a diagnosis.

Holly Schneider for Diabetes awareness, and osteomyelitis

Don't mess around and lose your life to your right foot. Love me.

Rumila Narraidoo for I have rare stripes

It's only at a quite later age now that I know my rare diseases

Jennifer Guglielmo for Relapsing Polychondritis

Stay strong

Brandy Anderson for Cyclical Vomiting Syndrome

Together we are stronger

Simon for Sarcoidosis treatment and prevention

I want to join the group to further my intest in education ,advocacy and newtreatment.forsarcoidosi.Inparticularandrarediseasesingeneral.

Jean Herrick for Granuloma Annulare

Help! Need help to find something to control spreading, pain and itching

Deanna for Pompe Disease

I may have Pompe but it will never have me!

Vilma for FND

Thankful every day I don’t fall.

Erin Dixon for Blood cancer

I look so good in stripes.

Breea Smith for Fragile X Syndrome

Jacob and Benjamin Smith have the genetic disorder called Fragile X Syndrome.

Stacy Smith for Follicular Non Hodgkin’s Lymphoma

FNHL is my B cell cancer with symptoms so unique even my doctors can’t fix.

Jodie Kawa for Ataxia

So wonderful to meet folks fighting the same battles!

SARAH BROWN for Myself

Every day get up and just keep trying.

Leysa Faber for Cushing's Disease

I show my stripes for Cushing's Disease

Jerry Lubben for Autoimmune Encepholitis DPPX

Thanks to my Wife And 2 Sons battling for me I'm still alive !

Khoo Joo Yee for MEN2A

Wish to hear from the same side

Heftziba Chase for Connective Tissue Disorders

What you feel is real, it’s not all in your mind. Together=solutions

Julie Karg for My daughter Miss Adaline

I fight for my daughter, she battles ASL deficiency. I’m grateful for her liver donor

Zelene Turner for Jayla Turner

Jayla Turner was born with Complete Digeorge Syndrome. Basically no immune system.

Linda McMann for Alpha 1 Antitrypsin Deficiency

I was diagnosed in 2004. I started once a week infusions in Feb 2005.

Talisa Shelby for Moyamoya and Water Diabetes

We are rare, but we are strong

Darlene Gottwald for NeuroSarcoidosis

My Mission: From the Veins to the Brains, “STOP Getting on my LAST damn NERVE!”

Vanessa P for LEMS & HCL

Such resilience and beauty all us rare people are, God Bless

Linda Scott for Marjorie Valdes

Bravely lived while fighting Multiple Myeloma

Ashley Wurtz for Bring a Rare disease patient

I am blessed to be rare and to be a mother. Love all and always

Eric for those who suffer silently

hold on a little bit longer, we see you too

Ashley Mize for MALS

Nevertheless, she persisted... Through the pain and beauty, with her best friend by her side.

Osigbemhe uweoghena for Because I love disabled

A life Worth living is worth living well

Andrea Rios for Leana M.

My daughter is 11 and she has OFCD.

Rhett Ambrose for My own bravery.

I'm conquering VACTERL one giggle at a time!

Eric Lynn for I have a rare disease

Please support NORD

Jane Porter for Ashley Chicoine

Ashley had TTP which caused to to die 3/28/16

Judy Howell for Antisynthatase syndrome

I was diagnosed about a year ago after beating breast cancer. Gods got this!

Shellie for My son, Mathew has Kabuki!

Your dreams can come true!!!

Rich Chiapetta for Aras Hoch

Inspired by Aras and all who battle rare diseases.

Holly Kuczynski for My son, Kaleb

Kaleb was diagnosed with pachygyria and polymicrogyria. He’s thriving and a warrior!

Scott Watson for CRPS

I want to show love and hope to all of us ❤️

Wren letang for FPIES

2 years old and starting to outgrow her FPIES to milk, rice and oats!

Kara for Ulcerative Collitis

Learning to live the new normal and be strong!

William Russell McAfee for Humanity

Danielle Marie Mayo for All living with RARE DISEASES

My son has Hypopituitarism, Rathke's Cleft Cyst, Alpha-1 Antitrypsin Deficiency. I have a paraganglioma.

Aisa Magsombol for The Idiopathic Hypersomnia Community

Your story matters.

David Bedich for Supporting cures for the millions

Supporting cures for the millions of people who suffer from rare diseases. #epidermalparasiticskindiseases

Denis LUCET for Proudness belonging rare diseases community

I am so pride to belonging to the rare diseases division of sanofi

Betsy Black for My daughter with Angelman syndrome

Thank you for bringing awareness to rare diseases!

Christie Hiltbrunner for my nephew Landon

My nephew Landon was diagnosed with an ultra-rare disease called aHUS at 2 years old.

Dani for Spina Bifida Occulta (SBO)

I began a campaign in 2020 for better information & care.

Jessica Coe for My angel, Milo James

Our angel, Milo James, if love could’ve saved you, you would’ve lived forever

Michelle Finnane for KBG SYNDROME & Pseudotumor cerebri

Proud parent and fierce advocate for The Noah ‍

Sheryl for CRPS Warriors (Suicide Disease)

Every 36 hours someone with CRPS commits suicide! 74% are at serious risk.

Lisa Marr for Mother, Caregiver, Motivator, Spokesperson, Warrior

Wish u all hope & love! https://www.gofundme.com/f/help-meredith-heal/share?qid=23f5a04157874ac985ae51346c604a91

Jeanine Lebsack for My rare disorder

Hello I’m Jeanine and I was born with the rare genetic disorder 16p11.2 micro duplication

Mohammad Sohail for Barrtars syndrome and Amelogenesis imperfecta

The awareness should be made regarding rare diseases and extensive Research .

Antonia for Angelman Syndrome

My angel! Angelman Syndrome

Kelly for The next generation

I show my stripes so noon HCU patient feels alone

Donald McCullough for Support NAAION

I am here to support efforts to find a cure for NAAION

Lara and Rose for I Am Lara, MIDAS Syndrome

Hello from Sharpsburg, NC, USA

D. Eli Penn MD for EDS and other under-recognized diseases

We need recognition to have a better future

Kathy Stagni for My hero and daughter Melissa

together we are strong!

Kelly Cummings for for Tyler 2002-2019

We are sharing our stripes for Tyler Cummings who passed away 2019.

Liz Fourie, 17q12 Foundation for the 17q12 community!

We're thrilled to be a part of this beautiful, rare community!

Aimee Zehner for LRP4+ Myasthenia Gravis

Wishing all of you an EMPOWERING RARE DISEASE DAY!!! Show your stripes!

Amanda for Louisa

Louisa has Perthes Disease. Thank you for helping us to show our stripes!

Amy Armett for Panhypopit, SAI

I don’t want anybody to feel forgotten. I want to help if I can.

Dr. Melissa Geraghty, Psy.D. for all of my fellow warriors!

#IamRare #TogetherWeAreStronger

Sky Collins for Our daughter Bonnie-Ann!

We show our stipes for our amazing daughter, Bonnie-Ann, diagnosed in 2021 w/ Malan Syndrome!

Linh Nguyen for for my beloved uncle

I hope every day we get to help even just one person

Carol Lovas for HPP

I was diagnosed with Hypophosphatasia (HPP) at age 67. I was misdiagnosed my whole life.

Yaffa Grace for My Mom: Dr. Jane Wick

I am so proud of my mom for fighting Morgellons disease every day!

Alison Leeds for My husband David Leeds

Dave is my hero, he is a hereditary angioedema nc1-inh warrior

Kristen Angell for My Dad

In loving memory of my dad, Ken Angell, he was a true rare warrior!

n-Lorem Foundation for Our Patients and Families!

At n-Lorem, we are committed to providing hope and help for nano-rare patients!

Daniel for Lucas - Menkes Syndrome

Single gene ATP7a resulting in poor copper metabolism and transport. Prognosis 3-10 years.

Karen Lembcke for Myself & NAM friends

Sending my best to all my NAM friends and to all people living w/rare diseases.

Sunny Ammerman for Septo-Optic Dysplasia, Panhypopituitarism, and ONH

Being Rare doesn't mean we're alone. Together, we are a POWERFUL force for change.

Allison Bones for Son Travis Isolated Congenital Asplenia

Travis died at age 4 due to undiagnosed ICA. I fight for ICA kids!

Lesli for my husband

Fred has been inspired by his own rare diagnosis to help others uncover new treatments

Lynne Kinst for people with bleeding disorders

I support the Rare Disease Community

Amanda Hopper for Functional Neurological Disorder

Thank you to NORD for all you do to raise awareness of Rare Diseases!

Jennifer Payne for PKU

Showing my stripes for life-saving nutrition with medical foods #PKU

Roxanne Houle for Moyamoya Disease Daughter Samantha

Awareness is Key !!!

Maria Bashford for DHPR Deficiency and Rare Diseases

We are advocates of our sweet son Oliver with DHPR. He is loving and special

Mandi Schollar for My son Rory

My 8 year old son Rory was diagnosed with Perthes Disease in Sept 2021.

Nicole Nunez for those fighting rare cancers!

We create novel treatments for patients fighting cancer such as HCC, HB, and HCN-NOS!

Meriem BOUSLOUK-MARX for orphan drug policy for HTA

Experienced at the G-BA in Germany how important a specific framework for orphan drugs is.

phil bungay for Mayors of Maidstone & Medway

And the Deputy Lieutenant of Kent (HM Queen representative in the county of Kent UK)

Angela Elerick-Graves for Gavin Elerick Joubert Syndrome Warrior

Gavin Elerick is a rare disease warrior. He always shows up with a smile!

Tara for myself & other rare warriors

I have TN1 & TN2—one-year post-MVD. We need more awareness and research for rare diseases.

Krystal Kitchen for Myself

I wear my stripes for myself and others with aHUS!

Shannah Hudson for Emmalyn Hudson, GA-1

My daughter is a rare disease warrior diagnosed with GA-1 through Newborn Screening Program.

Alexandra Folleco for My sister, Daniella Folleco

Remembering and honoring my sister Daniella Folleco who passed away from osteosarcoma in 2007.

Sarah Forsman for those just starting their journey

rare due to alpha mannosidosis, but we are all on unique journeys

Jee Deogracias for my youngest daughter Mia.

I show my stripes for my incredible daughter with de novo 16p11.2 duplication.

Jaime for for my friends and family

They are best in class in the rare herd. Always in their corner!

Carl J Accettura for TSC Patients

Let's all work together to find therapies and find cures too !

Christine Corpus for Ehlers-Danlos and Behcets

Awareness is the beginning of progress.

Saeed R Purcell for PKU

I'm 'special'; as you can see, PKU is only one reason.

Shannon Killebrew for Myself, a proud RSD/CRPS Warrior

My RARE journey continues. Water from a syringe. Strength. Advocacy. Awareness. Survival. ~ Shannon Killebrew

Tammy Carr for Multiple Myeloma

Be Encouraged

Christal for CIDP

We wear our stripes in hopes you won't have to.

Nikkitha Griffiths for Summer-Mae Kelly and Grace Griffiths

My Friends Daughter and My Daughter both have Rare Condition! #rarebutstrong

Theresa Granados for Narcolepsy Type1 with Cataplexy

I’m thankful for learning about NORD.

Allie Crafton for my zebra family

My dad, sister-in-law, and our member organization leaders inspire me every day.

Annissa Reed for Grandpa Caneva

In memory of my gentle and kind Grandpa Caneva. We love and miss you!

Quilvio Martinez-Valdez for My Niece

Happy Rare Disease day!