Published February 29, 2024 by NORD
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 …
Read morePublished February 29, 2024 by NORD
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 …
Continue reading “Living a Full Life After Diagnosis: Risa’s Story in Honor of Rare Disease Day”
Read morePublished February 26, 2024 by NORD
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 …
Read morePublished February 23, 2024 by NORD
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 …
Continue reading “Overcoming the Obstacles: Sareena’s Story in Honor of Rare Disease Day”
Read morePublished February 16, 2024 by NORD
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 …
Read morePublished February 9, 2024 by NORD
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’ …
Continue reading “Invisible Stripes: Leigh’s Story in Honor of Rare Disease Day”
Read morePublished January 25, 2024 by NORD
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 …
Continue reading “Guest Blog: Why I Created Zebra Hop”
Read morePublished March 3, 2023 by NORD
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 …
Read morePublished February 23, 2023 by NORD
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 …
Continue reading “Rare Disease Day 2023: ‘A Day To Be Heard’”
Read morePublished November 16, 2022 by NORD
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 …
Read more