Rare Disease Day and the Spotlight on NORD Member Organizations
Published April 04, 2022
WELCOME TO NORD’S RARE DISEASE DAY EVENT !
Thank you all for attending NORD’s Rare Disease Day celebration! Now that you’re here…
- Take the time to tell us why YOU #ShowYourStripes using the form below – be featured on screen during the event!
- Explore all the powerful rare patient and community stories submitted to NORD this year!
- Discover and utilize NORD’s newly launched resources – don’t let the momentum end after Rare Disease Day.
- 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...
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!
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
RDD
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
Rare Disease Day News & Stories
Read more >
Scleroderma and Horses: Whitney’s Rare Disease Day Story
Published February 28, 2022
Rare Disease Day 2022: Grace’s Story
Published February 28, 2022
#ShowingYourStripes Through Advocacy: Kala’s Story for Rare Disease Day
Published February 28, 2022
Removing the Obstacles: Steven’s Rare Disease Day Story
Published February 28, 2022
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!
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.
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.
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.
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.
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
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