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...
Nadine Janetsky for Alpha-1 Antitrypsin(ATT)
My Alpha-1 is mostly my lungs. I'm on oxygen 24/7.
Doreen Browdy for PVNH Periventricular Nodular Heterotopia
My beautiful daughter, Olivia has a rare neurological disorder called Periventricular Nodular Heterotopia
Kathy Colalillo for All of us that suffer.
Wearing my stripes proudly my fellow patients with warm Autoimmune Hemolytic Anemia
Kathryn McFadden for My husband, Joe.
For 13 years, my husband, Joe, bravely battled CRPS, a syndrome that left him in constant, severe pain. The pain from this disease is ranked off of the 1 to 10 pain scale. He was usually at 12 to 15. Battling the pain caused damage to his brain. He fought the pain and dementia for the last years of his life.
Julie Marie Sheleny for Pediatric Crohn's disease
My daughter inspired me to be a better mom each and every day!
Taylor Augustyn for my Mom!!!
My mom passed away extremely suddenly from HSE. I want to raise awareness for this rare disease and anyone else experience loss from it <3
ELIZABETH A ARLEDGE for Susac Syndrome
I wear my stripes for my beautiful daughter Elizabeth, who has been fiercely battling Susac Syndrome for several years, and to all the warriors out there fighting with her.
Kelly A Kiggins-Lund for Me
Living with Stiff Persons Disease Dermatomyositis CVID IIH - Keep persevering!
Deb Westwater for my AmAzInG daughter, Madison Austin
Proud of this lady for never giving up and fighting for her health and others
Lynn Julian for all who cannot speak up.
Advocating is the way to be the change you wish to see in the world!
Tonisha for Atypical Hemolytic Uremic Syndrome
I show my stripes for Atypical HUS fighting since 1995!
Bonnie Manzo for I show my striped for my family and I
I show my stripes in support of research for diseases we endure that currently have no cure and are progressive and chronic with each one having the ability to be very disabling.I support efforts for drugs to treat pain and slow progression.I support that there is a better understanding in the medical community so as to avoid long diagnosis times and ineffective treatment plans due to lack of knowledge about the condition. Small fiber neuropathy Neurofibromatosis Erythromelalgia POTS Dysautonomia Acquired Lipodystrophy Hyperacusis Mast Cell Activation Syndrome
Bonnie for My nephew born with HLHS, our families miracle child! I also where my own stripes for CVID, Adrenal Insufficiency and EPI (Exocrine Pancreatic Insufficiency) three rare ones!
Our family is wearing our stripes! Lincoln HlHS, Bonnie Common Variable immunodeficiency.
Scotty Crawford for Pulmonary Mucormycosis
To raise awareness to rare diseases
Rebecca Symbal for Emmett James
Emmett James you are so brave and strong! We love you and you’re “stripes”!
Nicholas hawkins for Pyoderma gangrenosum
I've been suffering in the hospital for 8 month trying to get my legs to heal it's been a long road
Jaweria Numan for Congenital Bile Salt Synthesis Defects
They are only rare untill they happen to you or your Loved ones.
Francis Masterbone for For my love Stacie
Stacie 11-26-1966 to 01-01-2022. Always and Forever Rare Disease MELAS
Justine Bennett for Narcolepsy type1
Narcolepsy with cataplexy Cataplexy can be mild or severe ranging from lose of muscle tone weak in knees to complete collapse kind of like being out you can hear everything but you can’t respond no matter how hard you try.
Rita May Palfreyman for Awareness
So many people do not understand even medical staff do no understand what narcolepsy and cataplexy do to family’s. I have this condition caused by medical negligence. But why do we have too fight to get help all the time?
ELBA TORO for I show my stripes for my beloved husband Armando
Armando has Creutzfeldt Jakob Disease since 2022, a 1 in a million rare disease. Love you.
Katie Walton for My son Joey with MLD
My Brave strong beautiful Joey and all the other MLD warriors!
Bob Brady for Rare Pituitary Disorders
I have panhypopituitarism, a rare condition affecting hormone secretion, I’m also an advocate
Kathy Sandberg for My son Cory
Wernicke Korsakof Syndrome as result of gastric sleeve! No short term memory.
Raina Fuentes for all Acanthamoeba Keratitis (AK) warriors!
One in a million is 1 too many. Contacts and water don’t mix!
Becky parrish for My Beautiful Granddaughter Alecia Parrish
Alecia has 13q 21.2 partical monosomy.
Tara for My son, Joey, who has Galactosemia.
We show our stripes for Galactosemia.
Abby Sowa for My 6 year old son
He was diagnosed with INAD 3 years ago.
Marie for Kellie
Kellie has frontotemporal dementia, a rare disease that brings great challenges for her. We see your true colors Kellie, you’re full of beauty and kindness. We love you!
Cathy Locke for daughter has systemic scleroderma CRESTSYNDROME
🙏 n ❤️ to all with rare disease helpers doctors help my 19 year daughter
Dawn Perry for My most amazing son, Liam!
This young man of ours is the epitome of what determination, strength & perseverance looks like on any given day!
Evelina Edmundson for Autoimmune Encephalitis
It's only rare because it's misdiagnosed.
Leesa for Primary Bilateral Macronodular Adrenal Hyperplasia
I have a mutation in my ARMC5 and it is genetic on my paternal side.
Leah for Brenda Lynn Smyda
I show my stripes for my mom who fought a tough battle against GIST cancer and for everyone diagnosed with this rare cancer ❤️
Wendy Dworski for Our daughter Gracie
Our daughter has Phenylketonuria “PKU” an inherited metabolic disorder. She amazes us every day!
Sabrina for Myself and everyone with a rare disease.
I show my stripes today and everyday. Stay strong!
Nicole Wheeler for My Hypophosphotasia and Narcolepsy Community
Lets make dreams come true…be seen, be heard & supported!
Renee Fortson for Granulomatosis with polyangiitis
I was diagnosed in 2013 and I was almost dead when my local Dr's sent me to Dr Ronald Falk and Dr Brent Senior in Chapel Hill NC. I had suffered for over 10 yrs but no one knew what was wrong with me. They saved my life. I've had 23 surgeries since 2007. I've got a wonderful team of Dr's. It's worth the 2 hour drive to go see them.
Brenda Fregger for All the Rare Disease Warriors!
We are a challenge to our medical teams, so I used today to also express gratitude each of them with a Hershey’s Hugs gift bag! Let the people in your life know how much you appreciate their love and support!
Janine Solley for Awesome Audrey
Your strength coping with Achalasia never ceases to amaze us. We love you.
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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