Highlights from Rare Disease Day 2025
From parachuting zebras to “Wicked” stars and breaking news from the NORD® Rare Disease Centers of Excellence, we’re thrilled to share our favorite moments from Rare Disease Day 2025! …
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Rare Disease Day Blog
NORD, Paramount Pictures Join Forces to Raise Awareness of Rare Disease
Paramount to match funds donated to NORD in support of new film Novocaine QUINCY, Mass., Feb. 27, 2025 — The National Organization for Rare Disorders (NORD®) is teaming up with Paramount Pictures …
Rare Is Everywhere: Be a Champion to the Rare Disease Community This Feb. 28
Think of 10 people you work with, 10 people you went to school with, or even 10 of your social media followers. Now, consider this: statistically, one in every 10 …
Hack Rare: Engaging the Next Generation of Rare Disease Innovators
By Aditya Tummala, Sydney Wiredu, Derek Liu, and Pranav Ramesh Harvard College, Class of 2026 Long-time researchers in the field of rare diseases know what it’s like to experience a …
Fighting Isolation When You Are One in a Million: Gabby’s Story in Honor of Rare Disease Day
By Gabrielle Z. A very special person once told me: “You are dealt the cards in this life that only you are meant to handle.” My name is Gabrielle but …
Living a Full Life After Diagnosis: Risa’s Story in Honor of Rare Disease Day
By Risa A. My name is Risa and I have Acromegaly. From the NORD Rare Disease Report: Acromegaly is a rare, slowly progressive, acquired disorder that affects adults, most …
Challenges Are Just Waiting for Solutions: Allison’s Story in Honor of Rare Disease Day
By Allison R. My ultra-rare disease, Cryopyrin Associated Periodic Syndrome (CAPS) has been isolating, defeating, and has made me feel helpless—but not hopeless. It has caused changes of career paths …
Overcoming the Obstacles: Sareena’s Story in Honor of Rare Disease Day
By Sareena Z. My name is Sareena and I was diagnosed with severe Factor VII deficiency when I was two months old. I am now 28 years old. Factor VII …
New Trajectories and Everyday Struggles: Thomas’s Story in Honor of Rare Disease Day
By Thomas B. I’m a patient living with Myasthenia Gravis, a rare neuromuscular autoimmune disease that affects the voluntary muscles. The immune system kills the chemical receptors in our muscles …
Invisible Stripes: Leigh’s Story in Honor of Rare Disease Day
By Leigh P. I was diagnosed with Graves’ disease in 2019 after four consecutive miscarriages and a lifetime of symptoms that were misunderstood by professionals. A person with Graves’ …