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…
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
Awareness
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
Viva NORD
Nats for Neutropenia Sufferers
May those not getting treatment for their Rare Disease be heard!
Ashlee Johnson for Self
Researching
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
Hi
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
Help
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!
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
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