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.
Rare is Mighty. Rare is Strong. Rare is ME.
my life I was told Cerebral Palsy,
I didn’t find out until52 that I PTLSD
Rare is unique and beautiful
Awareness
I support anyone living with a rare disease, especially the undiagnosed.
Thank you for helping us ALL address this situation and stop suffering while we wait
I’m in the hospital today, with Pheocromocytoma which I was diagnois with in 2018
Viva NORD
May those not getting treatment for their Rare Disease be heard!
Researching
We’ve just had a diagnosis….on our adult daughter.
Survivor of Erysipelas luckily diagnosed by Old time Infectious Disease Specialist, Robert Hunt MD. RIP
I was diagnosed with IIH almost five years ago and am still suffering from it
Here’s to living your life, in spite of your rare disease.
Hi
I have trimethylaminuria
Its difficult sometimes but I’m trying to learn how to cope.
The rare disease I have takes about 5 years to get a diagnosis.
Don’t mess around and lose your life to your right foot. Love me.
Help
Hoping there is some kinda awareness to help myself with my disorder .
Everyone deserves empathy, interested researchers, information and hope for greater understanding when facing a raredisorder.
It’s only at a quite later age now that I know my rare diseases
I’m in early stage,very concerned about the future. Please let’s all help provide a cure!
Looking for information on Klippel-Feil Syndrome.
I want to publish this rare case report
Extensive Peritoneal carcinoma questions
Mental health and well-being
.
Diagnosis is key to proper health care, we must advocate – it’s critical to care!
My son is newly diagnosed and we definitely need community
Came across this site while researching PA. Now I’m diagnosed with B9 issues.
Warrior fighting MALS, Surgery in 2 weeks!
Hi pleasure to be here
Thank you guys
You are awesome
Thanks a bunch i
Stay strong
Together we are stronger
Thankful for Nord and support for rare disease day!
I want to join the group to further my intest in education ,advocacy and newtreatment.forsarcoidosi.Inparticularandrarediseasesingeneral.
I’m new to this — do not know what to say.
It took 16 years and countless “specialists” but I finally know what’s causing my symptoms
Help! Need help to find something to control spreading, pain and itching
I may have Pompe but it will never have me!
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?