Published 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 November 20, 2023 by NORD
By Dulce Q. This is the story of my extraordinary father, a man who courageously faced dementia, triumphed over colon cancer, and grappled with the relentless advance of Amyotrophic Lateral …
Read morePublished October 28, 2023 by NORD
Celebrating internal medicine physicians on National Internal Medicine Day We continue to be inspired by our advocates and volunteers who drive recognition of rare disease as an urgent public health …
Continue reading “Volunteer Spotlight: Dr. Kristen Kingzett”
Read morePublished September 30, 2023 by NORD
NORD is proud to share this patient story in recognition of Rare Cancer Day 2023. Learn about Rare Cancer Day here. My name is Toni, and in 2015, I was …
Read morePublished September 30, 2023 by NORD
NORD is proud to share this patient story in recognition of Rare Cancer Day 2023. Learn about Rare Cancer Day here. My name is Jennifer and I am from Holly …
Continue reading “The Privilege of Access to Care: Jennifer B.’s Story in Honor of Rare Cancer Day”
Read morePublished August 19, 2023 by NORD
This year, NORD Advocate Judy A. testified before the Hawaii state legislature, leading Hawaii to pass a law making it easier for residents with rare diseases to access out-of-state physicians …
Read morePublished August 19, 2023 by NORD
By Kerry Wong I am writing a book because there are so many incredible stories that need to be told, and so many people who need to hear (or read) …
Continue reading “Kerry’s Kaleidoscope of Rare Disease Stories”
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