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.
I show my stripes for...
Maria L Franceschini for Hirschsprung's Disease
I'm strong,I can do this and I will NEVER give up.
Dorit Cohen Carmon for RareDisease Therapies development Virtual Summit
Learn about advances and practices of Rare Disease therapies development from biotech & pharma professionals.
chawki Abi Zeid for HFI
WHEN CAN I FOUND DATA ABOUT HEREDITARY FRUCTOSE INTOLERANCE
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!
Liz Kijowski for My daughter Caroline who has BFLS
Our sweet Caroline is our firstborn and the light of so many lives. She a friend to everyone and has taught her family what true unconditional love really is. She is our blessing!
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
Catherine Harrington for Allison W
I love you. I relate to you. Iam in your corner!!!!
Jennifer Current for Aleksi Homesley
For my eldest child, who has Familial adenomatous polyposis, Ehlers-danlos syndrome and Autism
Sandra Martin for My daughter, Chelsea Flood
Our daughter Chelsea who has Polycythemia vera and portal vein thrombosis.
Jennifer Eberwein for Living with these diseases
I have NCS, PCS, and SMAS.
Renee Larose for Ilven
I was born with Ilven. A rare skin disease. I live in North Bay Ontario Canada.
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!!
Emma for My baby Carter
My baby boy, you make me so proud of how well you cope daily with everything.
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
Antonia Byrum Vulpitta for All rare Zerbras
Being born dead a life Expectancy of not to live past 2 years old rare & extra rare Zebra.
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!
SUBMIT YOUR RARE DISEASE DAY DEDICATION
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.
LIGHT UP THE WORLD FOR
RARE DISEASE DAY®
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?
2023 Rare Disease Day Sponsors
Silver
Bronze
Campaign Supporters
Media Supporter
Additional Supporters
