ABOUT Rare Disease Day®

It’s a day to raise awareness of the over 7,000 rare diseases that impact over 300 million people globally!

The National Organization for Rare Disorders (NORD) is proud to be the official US partner for Rare Disease Day. We work with our sister organization EURORDIS (Rare Diseases – Europe) and others all around the world to drive an international campaign that shines a light on rare diseases and advocates for health equity for all those living with a rare disease. Visit the international Rare Disease Day site for additional information and resources at rarediseaseday.org.

On this site you can find ways to get involved in events and activities taking place across the United States.

Ways to Get Involved

Stayed tuned for more resources and other ways to get involved!

Show your stripes®

The zebra has become the official symbol of rare diseases in the United States. In honor of our shared mascot we wear striped clothing and accessories to show our support of those lives impacted by a rare disease.

Wearing stripes can start a conversation that helps others learn the facts about the prevalence and challenges of rare diseases. Take a picture of your striped look and share it on social media with the hashtags #ShowYourStripes and #RareDiseaseDay and let’s make some noise for our herd.


Rare Disease Day will continue to be a bit different this year as the ongoing pandemic limits our plans to meet in person.

There are many ways we can come together even if we don’t do so physically. Being part of a global chain of lights in recognition of Rare Disease Day is one example. You can be part of it either by helping to light up monuments and buildings near you in Rare Disease Day colors (blue, green, pink and purple). You can even light your own home in these colors and encourage your friends and neighbors to do the same.

Hundreds of places and people have been a part of growing the global chain of lights. Will you join us too?

I show my stripes for…

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Shekita Green for Neuromyelitis Optica

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

Christy Reynolds for Spastic Parapaliga

my life I was told Cerebral Palsy,
I didn’t find out until52 that I PTLSD

Valentina Sosa for NORD!

Rare is unique and beautiful 🤩

Betsy for Bladder exstrophy


Terri Chmielewski for Dercum’s Disease

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

Rana for ALL

Thank you for helping us ALL address this situation and stop suffering while we wait

Lorena Watkins for Me living with Pheochromocytoma

I’m in the hospital today, with Pheocromocytoma which I was diagnois with in 2018

Andre Daniels for Anti phospholipid syndrome


Nats for Neutropenia Sufferers

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

Ashlee Johnson for Self


Robbin Fazzini for My daughter.

We’ve just had a diagnosis….on our adult daughter.

Paul Macellari for Erysipelas

Survivor of Erysipelas luckily diagnosed by Old time Infectious Disease Specialist, Robert Hunt MD. RIP

Jenelle Roth for Idopathic Intracranial Hypertension

I was diagnosed with IIH almost five years ago and am still suffering from it

Katy Conway for my fellow Addison’s Disease patients

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

Vivian for Trimethylaminuria

I have trimethylaminuria
Its difficult sometimes but I’m trying to learn how to cope.

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.

Melinda Staten for Multisystem erosive lichen planus


Brianna Pacheco for 4 my future happiness

Hoping there is some kinda awareness to help myself with my disorder .

Mary Ann Scott for Everyone deserves hope and understanding

Everyone deserves empathy, interested researchers, information and hope for greater understanding when facing a raredisorder.

Rumila Narraidoo for I have rare stripes

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

Marianne Jenkins for Alpha 1 and a cure!

I’m in early stage,very concerned about the future. Please let’s all help provide a cure!

Amanda for Klippel-Feil Syndrome

Looking for information on Klippel-Feil Syndrome.

Dr. Muhammad Sayed Inam for Case Report

I want to publish this rare case report

Monica for Hope against Extensive Peritoneal Carcinoma

Extensive Peritoneal carcinoma questions

Anilla Del Fabbro for OCD

Mental health and well-being

Margrét Dís Óskarsdóttir for all children with rare diseases


Jackie Danielson for everyone.

Diagnosis is key to proper health care, we must advocate – it’s critical to care!

Margaret Claycomb for SLC6A1 genetic mutation

My son is newly diagnosed and we definitely need community

Susan V Zorn for Hashimotos and Pernicious Anemia

Came across this site while researching PA. Now I’m diagnosed with B9 issues.

Elizabeth Burns for Me

Warrior fighting MALS, Surgery in 2 weeks!

Rachael Kinyua for Chiari with syringomyelia

Hi pleasure to be here
Thank you guys
You are awesome
Thanks a bunch i

Jennifer Guglielmo for Relapsing Polychondritis

Stay strong 💪

Brandy Anderson for Cyclical Vomiting Syndrome

Together we are stronger

Vanessa Rohrs for Multifocal Avascular Necrosis, Osteonecrosis

Thankful for Nord and support for rare disease day!

Simon for Sarcoidosis treatment and prevention

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

Marilyn McDonald for Non 24 is my disease.

I’m new to this — do not know what to say.

Mykaila Potthoff for Mastocytosis

It took 16 years and countless “specialists” but I finally know what’s causing my symptoms

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!

Deborah Demaso for Dermatomyositis and eagle syndrome

I am so tired.

Helen Morris for HERPES CURE

The reason why most people are finding it difficult to cure HSV 1 or 2

Ashley Gollihar for Guillain Barre Syndrome

I have guillain barre syndrome

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.

Pamela Blair for Lupus & worms

Worms are coming out of my hands

Megan E Forbes for Medullary Sponge Kidney

My most recent diagnosis of MSK is ANOTHER rare condition I have.

Stacy Smith for Follicular Non Hodgkin’s Lymphoma

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

eisaku nakamura for NORD


Starlet Culp for Ocular and Generalized Myasthenia Gravis

Having Myasthenia Gravis was lonely until I found sites where MGers shared their stories.

Kate watkins for Superior semi circular canal dihistidance

Right side / had brain tumor as well

Jodie Kawa for Ataxia

So wonderful to meet folks fighting the same battles!

Michelle LeBlanc for love

Many differences makes the word beautiful

SARAH BROWN for Myself

Every day get up and just keep trying.

Melissa Dolan for Ethan

Hemophilia A (FVIII deficiency) is complicated and expensive!!

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

Aya for Gout disease is my dissertation

Inherent disease associated with gout

Cheri Haskell-Fugere for Ovarian cancer

It has been an experience that I never went to repeat.

Alfred Garza for Myasthenia Gravis it’s limited me

My Myasthenia Gravis has turned my life upside down. I have seen the light twice.

Julie Karg for My daughter Miss Adaline

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

Renee Pasich for Cyclic vomiting syndrome

I have cyclic vomiting syndrome

Christine Ingraham for Wandering spleen

It’s not supposed to be genetic but bot my daughter and I had it.

Nancy Bell for MCADD

2 Grandchildren with MCADD

Sally Liu for Autism, Asperger’s, and Smith-Magenis Syndrome

I was curious to know anything about SMS, Smith- Magenis Syndrome, or testing for it?

Mary Jo for Paratonia congenitca

Need help n to find other people like me

Zelene Turner for Jayla Turner

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

Monique Morsette for Albright Hereditary Osteodystrophy

Encouraged to support

Linda McMann for Alpha 1 Antitrypsin Deficiency

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

Kom for ACC, hydro

Is there a group or info or support group for people with a kinked brainstem?

Yasser Osman for Improve scientific research all overtheworld

Good luck

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!”

aaliyah for mastocytosis

you are beautiful

Sultana for I show my stripes formypatient

take care of them

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

Karen for Ledderhose and Dupuytrens

I’m told that both of my diseases are rare for women and most always genetic

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

Griselda Dominguez for H S

I have hydradentitis supralativa-50 years now! I will survive!

Donna Aldrich for My Ehlers Danlos & CMT1a

I was diagnosed with both Ehlers Danlos & CMT1a

Sonia Perez for Jacob

I am looking up this disease


Doing fine and still learning

Mary clive for summer my niece take care

hope you get better and support to feel a lot happier and less painful inyourself

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

Jody Chane for 13 chronic illnesses

I feel awful all the time

Alice Rebecca Kallmann for Limited Scleroderma-CREST

I’m newly diagnosed with Scleroderma and want to bring awareness to this rare disease.

Abdulkerim for raredisease


Melissa for Warriors with GIST cancer!

We are Warriors💜

Andrea Rios for Leana M.

My daughter is 11 and she has OFCD.

Heather Peters for me…

I was diagnosed with cervical dystonia approximately 6 years ago.

Rhett Ambrose for My own bravery.

I’m conquering VACTERL one giggle at a time!

Layarne Sudborough for Hereditary Alpha Tryptasemia, Ehlers Danlos

I have just discovered I have Hereditary Alpha Tryptasemia, Ehlers Danlos Syndrome and Lichen Sclerosus

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

Brooke for Turner Syndrome

My daughter was diagnosed with Turner syndrome at 17 when many cases are identified atbirth

Woodson (woody) for We are one Together

I have myasthenia gravis

Judy Howell for Antisynthatase syndrome

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


Awareness is key to solving the puzzles of rare diseases! Wear your stripes!

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!

Linda Martin for brain cancer


Trish Kinton for Hemiparkinsonism/hemiatrophy with dystonia

I am one of 4 family members that have been diagnosed with a rare illnes.Eachsodifferent

Heather for Brainstem Glioma

My brainstem glioma was a low grade astrocytoma that grew around nerves in the brainstem.

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!

Cynthia Meza for My son Zachariah Meza Madera

My son Zachariah was born with Walker Warburg Syndrome in 2008. He passed away at5months

Kara for Ulcerative Collitis

Learning to live the new normal and be strong!

William Russell McAfee for Humanity


Michael W. Young for The Cutaneous Lymphoma Foundation

Let’s celebrate or progress today and work harder tomorrow for Rare Disease cures!

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.

Mary Anne R. for possible congenital asplenia

I was apparently born without a spleen. Discovered by two presurgical CT scans in 1985:asplenia.

Marie Harris for Cervical dystonia

Hopefully with all we can get help with all rare diseases.

Jeanne Loughran Montgomery for Harper

I know grandparents of Harper and glad to support her on Rare Diseases Day &everyday.

David P.Westbrook for PKU.

Stand up for PKU. Yay.

Vicki for Sarcoidosis

Sarcoidosis – never heard of it until I almost lost my vision. Purple Ribbon

Aisa Magsombol for The Idiopathic Hypersomnia Community

Your story matters.

Erin for Nf1


TracyPotter for I have Homocystinuria

I was born with Homocystinuria & didn’t even know until today we had a RareGeneDay

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

Jo Denvir for Renal coloboma syndrome

Thanks for advocating for us!

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.

Nancy for Behcets

Thank you for showing your stripes!!

Teri Rose Wessley for Median Arcuate Ligament Syndrome

Currently in labor at 34 weeks and have MALS. Weighing in at 129 pounds.

Bev Hart for Those I love with FND

Love, strength, kindness, endurance. May these things not be rare, in the Rare Disease journey!

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

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

Wesley Kim for patients all over the world

Sobi supports patients with rare disease!

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 💙

Deborah Vick for Myasthenia Gravis, Ehlers Danlos

We are not defined by our obstacles but rather by how we choose to overcome

Brenda Grossie for Primary Lateral Sclerosis

I struggle with getting information and having contacts with the same disorder.

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

Dana Ray for Support


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!

Jo-Ann D’Angelo for Anyone coping with Parry Romberg.

Thank you to NORD for all you do to support the rare disease community.

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!

Janet for all who fight rare diseases

My faith in God, NORD, fellow fighters keep me going strong as I can.

Dona Winnowski for the Complicated Pericarditis Community!

Thank you NORD for your support of the many suffering from rare diseases!

Tara Mulligan for Infant botulism patients and survivors

Here’s to the babies, families, medical teams and researchers who fight and care.

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.

Marie Barber for My daughter, she has fhhnc.

The cures for rare diseases have more in common than we think.

Pimon Chaturarat for LEMS

I’m a patient of LAMS.

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!

Elizabeth Young for My daughter Emma

I am a Mother to a daughter who has battled many rare diseases .

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.

Deborah Skolaski for Cori Skolaski

I advocate for the rare disease community in Texas

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!

Lynne Kinst for people with bleeding disorders

I support the Rare Disease Community

Lesli for my husband

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

Christine E Clark for my Mother

My mother had several heart attacks, died of a heart attack before the ambulance came.

Scott L. Causey for Everyone impacted by rare diseases

Today let’s all join together and help everyone impacted by a rare disease!

Amanda Hopper for Functional Neurological Disorder

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

Dana for My father

Fighting against Paget’s disease!

Jennifer Payne for PKU

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

Theodora DeStephano for Orthostatic Tremor Syndrome

I would like to know about recent research.

Karen Rees for Short Bowel Syndrome

Looking forward to this event.

Roxanne Houle for Moyamoya Disease Daughter Samantha

Awareness is Key !!!

Jill Pollander for all who care for rare!

Celebrating rare!

Maria Bashford for DHPR Deficiency and Rare Diseases

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

shannon for my patients

I want to be the voice for the patients

Mandi Schollar for My son Rory

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

Marian Furst for rare disease patients everywhere

As a rare disease patient, I appreciate all of the work NORD does for us.

Angela Milou for those who need hope

We are stronger together!

Kerri Engebrecht for Jacob and my dad

We need education, advocacy and awareness for research, treatment and cures!

Nicole Nunez for those fighting rare cancers!

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

mas sato for Myasthenia Gravis

Just started Vyvgart infusion last week. No change yet except more itchy. Hoping and Praying

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!

J Olson for Our customers and their patients.

We are the voice for those who need help finding their own.

Tara for myself & other rare warriors

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

Mark Shear for Helping others through my experiences.

Looking forward to learn from the event.

Tiffany Sammons for My Son Rowan

I share my stripes for my son Rowan who is a Coffin-Siris Syndrome warrior!

Connor B. Judge Foundation for NMO and the RARE Space

We are a member of the herd because we are small but mighty!

Krystal Kitchen for Myself

I wear my stripes for myself and others with aHUS!

JM Carlisle for Caring

Its special to be part of a solution with SOBI!

Michael Shaw for Myself

Lets Win!!!

Jacob Kaplan for My late mother

Who we lost to glioblastoma

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.

Jennifer Ann Stohr for Me – for public education.

Rare is beautiful! Rare is possible. Rare is brave. Rare is strong. Rare is me.

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!

Kristen Angell for Stacy McCarroll

In loving memory of my beautiful cousin/sister/best friend, Stacy! Always in my heart and will continue your fight!

Debbie Drell for My sweet and obnoxious little (in height) big (in age) sister, ALEX FLIPSE!

My sister has been my inspiration for year — my best friend, my mentor, my idol. Ilu

The Manus Family for Fred Sarke

We show our stripes for Papa Fred, who never gives up!

Lisa Sencen for Fairways and greens…

A quick shout out to all… BRAVO

Amanda Thomas for All the Zebras!

Happy Rare Disease Day!

Stella and Axel for Our Pappa

We show our stripes for our pappa, who lives with Addison’s disease.

Emmett Roberts for my uncles Ray & Greg!

Love you guys!

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