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'm strong,I can do this and I will NEVER give up.
Learn about advances and practices of Rare Disease therapies development from biotech & pharma professionals.
WHEN CAN I FOUND DATA ABOUT HEREDITARY FRUCTOSE INTOLERANCE
I’m amazed at my daughter’s resilience and persistence at all times!
I love you, little guy. You're a trooper. Cystic Fibrosis is no fun but you handle it like a champ!
Always a motivation to see your happiness & positive attitude and making changes to help yourself.
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.
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.
I have full blown sickle cell disease and for years I have struggled with this disease and thankful for NORD ....
I show my stripes for research and how I come off of dialysis by nutrition , immunotherapy, exercise and continue to study all rare dx
Supporting all the amazing KIF1A/KAND warriors around the world!
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!
I show my stripes for Haddie, she was born with Heterotaxy, but that doesn't stop her. She lives her life to the fullest.
Faithful healing to all hurting around the world.
Axl has Wolmans Disease. Keep fighting and amazing everyone, we love you!
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.
We wear our colors for Bug and his KBG syndrome family! #KBGfdn
I love you. I relate to you. Iam in your corner!!!!
For my eldest child, who has Familial adenomatous polyposis, Ehlers-danlos syndrome and Autism
Our daughter Chelsea who has Polycythemia vera and portal vein thrombosis.
I have NCS, PCS, and SMAS.
I was born with Ilven. A rare skin disease. I live in North Bay Ontario Canada.
I’ve learned to live with the pain of Dystonia, but stay optimistic for a cure.
Nano-rare but together we are strong!
O’ Donnell Luria Rodan syndrome
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 🦓
Mom, Dad and brother love you so much! You make us proud! Continue to kick LCHADs butt!!
My baby boy, you make me so proud of how well you cope daily with everything.
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!♥️
I show my stripes for my strong, brave Branchi Oculo Facial Syndrome warrior!
Please support research for a cure for CTNNB1 syndrome!
Dravet Syndrome 8/12/14-5/18/15 Rest in peace, my angel baby.
Rare is always better than being like everything else..
Amelia battles Batten Disease and all of its terrible symptoms with so much courage!
I’m Kimberly I’m 26 years old. I have scleroderma Raynauds and APS
Being born dead a life Expectancy of not to live past 2 years old rare & extra rare Zebra.
i won't give up
My wife fights CAD everyday. She's a true warrior. And a great mom.
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.
Hereditary Spherocytosis Pediatric Mastocytosis My goofy little dude!
Stayed tuned for more resources and other ways to get involved!
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?