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…

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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

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

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    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?

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