After you view the On-Demand NORD Celebration, participate in this survey to be entered to win a swag box!

Overview Dedication Wall Stories Next with NORD Sponsors Donate to NORD


Thank you all for attending NORD’s Rare Disease Day celebration! Now that you’re here…

  1. Take the time to tell us why YOU #ShowYourStripes using the form below – be featured on screen during the event!
  2. Explore all the powerful rare patient and community stories submitted to NORD this year!
  3. Discover and utilize NORD’s newly launched resources – don’t let the momentum end after Rare Disease Day.
  4. Donate and help others live their best rare lives!

NORD is so thrilled at the level of excitement and engagement around Rare Disease Day across the country and across the globe. We hope you are all wearing your stripes – now get ready for a fun and meaningful celebration!


I show my stripes for...

Loading the latest submissions...

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


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


Nats for Neutropenia Sufferers

May those not getting treatment for their Rare Disease be heard!

Ashlee Johnson for Self


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


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!

Deborah Demaso for Dermatomyositis and eagle syndrome

I am so tired.

Helen Morris for HERPES CURE

The reason why most people are finding it difficult to cure HSV 1 or 2

Ashley Gollihar for Guillain Barre Syndrome

I have guillain barre syndrome

Vilma for FND

Thankful every day I don’t fall.

Erin Dixon for Blood cancer

I look so good in stripes.

Breea Smith for Fragile X Syndrome

Jacob and Benjamin Smith have the genetic disorder called Fragile X Syndrome.

Pamela Blair for Lupus & worms

Worms are coming out of my hands

Megan E Forbes for Medullary Sponge Kidney

My most recent diagnosis of MSK is ANOTHER rare condition I have.

Stacy Smith for Follicular Non Hodgkin’s Lymphoma

FNHL is my B cell cancer with symptoms so unique even my doctors can’t fix.

eisaku nakamura for NORD


Starlet Culp for Ocular and Generalized Myasthenia Gravis

Having Myasthenia Gravis was lonely until I found sites where MGers shared their stories.

Kate watkins for Superior semi circular canal dihistidance

Right side / had brain tumor as well

Jodie Kawa for Ataxia

So wonderful to meet folks fighting the same battles!

Michelle LeBlanc for love

Many differences makes the word beautiful

SARAH BROWN for Myself

Every day get up and just keep trying.

Melissa Dolan for Ethan

Hemophilia A (FVIII deficiency) is complicated and expensive!!

Leysa Faber for Cushing's Disease

I show my stripes for Cushing's Disease

Jerry Lubben for Autoimmune Encepholitis DPPX

Thanks to my Wife And 2 Sons battling for me I'm still alive !

Khoo Joo Yee for MEN2A

Wish to hear from the same side

Heftziba Chase for Connective Tissue Disorders

What you feel is real, it’s not all in your mind. Together=solutions

Aya for Gout disease is my dissertation

Inherent disease associated with gout

Cheri Haskell-Fugere for Ovarian cancer

It has been an experience that I never went to repeat.

Alfred Garza for Myasthenia Gravis it's limited me

My Myasthenia Gravis has turned my life upside down. I have seen the light twice.

Julie Karg for My daughter Miss Adaline

I fight for my daughter, she battles ASL deficiency. I’m grateful for her liver donor

Getting Involved After Rare Disease Day

State Report Card

Last week, NORD launched the latest edition of its annual State Report Card, which rates all 50 states on performance on rare diseases policies such as newborn screening, Medicaid eligibility and prescription drug out of pocket cost protections. Check out how your state did – and explore case studies, maps, advocacy opportunities, and more!

Learn More

Start a nonprofit

With support from the Chan Zuckerberg Initiative, NORD’s RareLaunch provides an accessible, self-guided educational platform that allows an individual to explore the steps to start a nonprofit and/or to engage in starting or expanding research efforts as a nonprofit leader.

Get Started

Centers of Excellence

The NORD Rare Disease Center of Excellence (CoE) program brings together teams of clinical experts in a nationwide network to provide standards of specialized care and disease management for people living with rare disease and their families. Learn more about NORD’s mission to improve health equity and create critical new connections to specialists across our nation.

Learn More

Share Your Story

NORD features and elevates patient stories all year round – not just on Rare Disease Day! Submit your story for the chance to be featured on NORD’s blog.

Learn More

IAMRARE Registry Program

Patient data is critical to the advancement of rare disease cures and treatment. NORD has assembled resources to support patients, organizations, researchers and companies interested in rare disease registries and natural history studies.

Learn More

Running for Rare

Through Running for Rare, NORD’s signature charity running program, runners join together with community partners to raise awareness for rare diseases while fundraising to contribute to NORD programs for undiagnosed patients.
Learn More

Thank you to our sponsors



Campaign Supporters

Additional Supporters

Media Partners


Alone, we are rare. Together, we are strong. Tell NORD – and the whole rare community – why you are a member of the herd!

Max. 5 words

Max file size 5MB.
Min. image size 260px X 260px
Drop files here or

Max. file size: 5 MB.

    Max. 15 words

    This field is for validation purposes and should be left unchanged.