Rare Disease Advocates and Supporters Share the Importance of Raising Awareness Ahead of Rare Disease Day 2023
Published November 16, 2022
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Thank you all for attending NORD’s Rare Disease Day celebration! Now that you’re here…
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 have lung and liver disease due to Alpha-1 and pray we find a cure soon!
Dedicate to my amazing little boy who hasn't had it easy with this disease and is a brave amazing sweet polite solider loved so much x
My wife is battling Myleofibrosis and Gastroparesis. She continues to teach and inspire her kids. She is an amazing woman who encourages everyone around her to live their best life.
Madelyn has Rare Critical CHD’s, and has survived 6 Heart Surgeries so far.
Lam Disease and TS . You are a survivor!
Although it is rare, stay positive!
Since my porphyria diagnosis, my life has been dedicated to porphyria advocacy. and education.
As a mother of a seven year old I was devastated with LAM diagnosis. But because of her, my family and my amazing LAM doctor I am back on my feet. We all have our struggles and rare desease is just one of them.
I am not too rare to care and share! I want to spread awareness to rare diseases and make sure others do not have to be gaslighted and suffer for so long!
Hi, My name Karen # Be Strong be your own Advocate live your life
Wishing strength and love to all individuals struggling with rare disorders and their families.
Thank you for supporting rare diseases day
Jmml is a very rare cancer of the blood and can not be cured by chemotherapy...the only cure is a stem cell transplant
HAE type3, FND, PANDAS, and PBC. Thank you mom, I wouldn’t be here without you
Bringing awareness to Urea Cycle Disorders!
From childhood to an thriving adult that has become an entertainer
Evie Beagles For all fellow Perigo Nodularis sufferers and other rare diseases.
My sweet Alexandra who we affectionately call “Squishy” is rocking this Rare Disease life. ❤️
spread awareness for all rare diseases!
I was dx with PAI-1 in 2001 after genetic testing.
In hopes of finding a cure for DESSH. May you keep sharing that infectious smile with the world, my sweet boy.
Keep fighting we are worthy of love and laughter.
Hoping for a cure or at least treatment
I'm looking for better treatments and support for my dercums
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.
Published November 16, 2022
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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!
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.
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.
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.
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.
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.
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Alone, we are rare. Together, we are strong. Tell NORD – and the whole rare community – why you are a member of the herd!
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