Rare Disease Advocates and Supporters Share the Importance of Raising Awareness Ahead of Rare Disease Day 2023
Published November 16, 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...
Christine Redshaw for Alpha-1 Antitrypsin Deficiency Awareness
I have lung and liver disease due to Alpha-1 and pray we find a cure soon!
Amanda harvey for My son Kaiden Daley
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
Bill Grabbe for For my wife Cheri Grabbe
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.
Marissa Greenway for Rare Critical CHD Warrior Madelyn
Madelyn has Rare Critical CHD’s, and has survived 6 Heart Surgeries so far.
Mary Kay Rainwater for Mary Kay
Lam Disease and TS . You are a survivor!
Annemarie for Lymfangioleiomyomatose (LAM)
Although it is rare, stay positive!
desiree lyon for acute intermittent porphyria (aip)
Since my porphyria diagnosis, my life has been dedicated to porphyria advocacy. and education.
Elena for LAM women
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.
Ashlea for Open SMAS surgery post op day 4!
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!
Karen Elizabeth Beetow for Advocate for Dermatomyositis & Pityriasis Rubra Pilaris
Hi, My name Karen # Be Strong be your own Advocate live your life
Lisa Lacroce Patterson for My daughter Audrey Patterson
Wishing strength and love to all individuals struggling with rare disorders and their families.
Brenen&Sadie Burd for Myotonic dystrophy type 1
Thank you for supporting rare diseases day
Gracelyn Green for Jmml
Jmml is a very rare cancer of the blood and can not be cured by chemotherapy...the only cure is a stem cell transplant
Sadie for Myself and My Caregiving Mother
HAE type3, FND, PANDAS, and PBC. Thank you mom, I wouldn’t be here without you
Danielle Smith for Urea Cycle Disorders!
Bringing awareness to Urea Cycle Disorders!
Tre’shawn Roberts for I have grown with Hip perthes from birth to adulthood still thriving
From childhood to an thriving adult that has become an entertainer
Evalyn Beagles for Perigo Nodularis
Evie Beagles For all fellow Perigo Nodularis sufferers and other rare diseases.
Angie LaBorde for MAND MBD5 Gene Deletion
My sweet Alexandra who we affectionately call “Squishy” is rocking this Rare Disease life. ❤️
Kaitlin for Cyclical Vomiting Syndrome
spread awareness for all rare diseases!
Charity Collins for PAI-1
I was dx with PAI-1 in 2001 after genetic testing.
Emily Smith for My brilliant son August
In hopes of finding a cure for DESSH. May you keep sharing that infectious smile with the world, my sweet boy.
Hope Creitz for Darker Disease
Keep fighting we are worthy of love and laughter.
Rowyn Capers for Mal de Dėbarquement Syndrome
Hoping for a cure or at least treatment
Claire Newton for Dercums disease
I'm looking for better treatments and support for my dercums
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.
Rare Disease Day News & Stories
Rare Disease Day and the Spotlight on NORD Member Organizations
Published April 04, 2022
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
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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