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 …
Rare Disease Day Blog
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’ …
Guest Blog: Why I Created Zebra Hop
Jonathan Kowalske, rare disease Dad and co-founder of Milwaukee’s Component Brewing Company, has created a national campaign in partnership with the National Organization for Rare Disorders (NORD) to raise awareness and …
Rare Disease Day interview with NORD President and CEO Peter L. Saltonstall and Boston Children’s Hospital’s Dr. Olaf Bodamer
Watch CNBC’s Rare Disease Day interview with NORD President and CEO Peter L. Saltonstall and NORD Rare Disease Center of Excellence Director, Dr. Olaf Bodamer of Boston Children’s Hospital, where …
Rare Disease Day 2023: ‘A Day To Be Heard’
Advocates Raise Their Voices To Support People Living With Rare Diseases Rare Disease Day 2023 is fast approaching, and NORD and its global partners are coming together to spotlight the unique challenges …
Rare Disease Advocates and Supporters Share the Importance of Raising Awareness Ahead of Rare Disease Day 2023
With 100 days till Rare Disease Day 2023, organizations and individuals across the country join the National Organization for Rare Disorders (NORD) to help make a difference for rare disease patients …
