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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Rakshit Aggarwal for Rakshit ASPS fighter

ASPS is one rarest kind of sarcoma, only early diagnosis is key to survival, due to poor diagnosis Asps spread in his lungs, brain, muscle and bone already.

Jan for My daughter, Allie.

Allie has Neurofibromatosis and she is such a strong and amazing person!

Kelsey Nelson for Silas Richard Nelson

Silas was born with Hirschsprung’s but continues to be a constant, smiling light in my life.

Rachel Alves for My reason why, Audrey Jo

Audrey Jo- CASK Gene Disorder rare beauty
#KickingCASK every day!

Sherri Bolin for I am showing my stripes for gastroparesis

I am battling Gastroparesis. Not going to let my happenings affect my happiness

Pam for My Hero Husband John

Battling TTP, ORN and Autoimmune Encephalitis – The Strongest Man I Know. You goth this, Babe!

Samantha Rambo for Maddox aka Diggy!

Keep defying those odds dude! We love you!

Sandra Asselin for In Memory of My Mom

My mom, diagnosed in 1984 with Scleroderma, died on August 27, 1989

Jo-Ann D’Angelo for Prevail over Parry Romberg Syndrome

Let RDD shed light, love and strength to all those coping with the many challenges.

Joan Powell for My MDS Family

Remember our disease is not a prison sentence. MDS Family ” Get Busy Living.”

Elisabeth Fluger for Mevalonate Kinase Deficiency (MKD)

My daughter was diagnosed at 2. It’s going to be a long and wonderful journey.

Christopher Velona for My Son Sebastian #projectsebastian

On this rare disease day, I support my son, Sebastian, and all rare disease families!

Mandy Keel for My beautiful son, Silas

Our son is rare and such a gift.

Jennifer Jepson for Abby 6 years, ITP

Abby is my youngest daughter, she wants to be a police officer when she grows up. She’s been so brave, I couldn’t be prouder. She was diagnosed with ITP the week of Christmas, and we are still trying to figure out what else is going on

Whitney Maltaner for MMIHS

Hello! This is Vivian she’s 19 months old and has MMIHS! She’s amazes us daily with how strong she is everyday with this rare disease!

Nakisha for People with Holt-Oram Syndrome like myself

I am a second generation recipient of Holt-Oram syndrome and I am so proud to show my stripes for the world to see!

Melissa Fox for 5 1/2 years withPeritoneal Mesotheliomia

I have survived 51/2 yrs with Peritoneal Mesothilioma which is in the lining of my stomach. It is life-ending but I’ve lived longer than most! More research!!!

Margaret Jamieson for Tarlov cysts

I would lkie to have a bullitin for Tarlov cysts disease

Rebecca fox for Jordan Boggs

Jordan jr has neutropenia, cohen syndrome, retinal dystrophy

Christine for Lafora disease patients and families!

Hoping for clinical trials in 2023.

Heather Menzel for My beautiful strong daughter Mckinley

I would like dedicate this to my daughter Mckinley. Who was diagnosed with an ABC

Ofelia Rodriguez Nievas for Alvaro

Alvaro [27] fought against Gorham Stout disease, with body and soul. Hoping no one else will suffer it

Susan Krug for Hypophosphatasia

I’m sharing to bring awareness to Low Alkaline Phosphatase
It Matters to get our Rare Voices heard all at once..

Jana A. Monaco for Stephen & Caroline with Isovaleric Acidemia

My children represent the importance of newborn screening & how early detection can forever impact life.

Donna Hutcheson for Kade Lott Noonan syndrome SOS1

Kade Lott Noonan syndrome SOS1
DOB 2/23/2023

Adrienne Hoffmann for my beautiful daughter Stella

Stella is 8 years old. She is funny, bright, loving, strong and the warrior of our family!

Debbie Drell for My big sister Alex

My bestfriend, my sweet sister, I love you Alex! I’m so glad you’re doing okay.

Kristen Angell for My dad, Ken Angell

Forever my hero!

Dee Porter for I have 5 rare disorders.

I have 5 rare disorders. Nord has been a huge aid in me getting the help I need, but I still struggle with doctors. It has been over 30 tears since I was diagnosed, and I still fight.

Gina Henry for My Grandaughter Adalynn

Praying for my granddaughter Adalynn, who is receiving treatment in Boston/Worcester for Tay-Sachs Disease.

Jenny Coffey for Tamoxifen Retinopathy SFN CRPS Awareness

I show my stripes for Tamoxifen Retinopathy, Small Fiber Neuropathy, and Complex Regional Pain Syndrome.

Katrina Alexander for Raising awareness about myositis

I’m hoping to raise awareness about Dermatomyositis and polymyositis

Ali for For elispy walk and stuff

Elispy needs to be addressed more

Rene for My son Cannon

I wear strips for my son who has been a Zebra for 17 years.

Martha King for My Granddaughter Sophie

Sophie has Williams Syndrome and is a joy to her family!

Amanda for Asher Lennon Lion

Asher is fighting Spinal Muscular Atrophy (SMA).

Victoria Arreola for Sprengal’s Deformity, Klipple Feil Syndrome and Pectus Excavatum.

We are stronger together

Ana acuna for For my son brave george

I dedicate this to my brave and strong son who’s been fighting this debilitating affliction for years now .

Gracie for My son Damian

He’s one of a kind! GET-4 CDG

Shannon Bootj for Lachlan Booth

Lachlan was diagnosed with SETD5, a rare genetic syndrome. Less than 500 cases worldwide.

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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