Published June 14, 2024 by NORD
In honor of Father’s Day, NORD spoke with volunteer advocate Steve K., father to two-year-old Hannah, about his connection to rare disease through his late wife, Stacey. Read about Steve’s …
Continue reading “Grief as Fuel for Advocacy: Steve’s Story in Honor of Father’s Day”
Read morePublished April 29, 2024 by NORD
By Lori W. My name is Lori, and I am currently dealing with a surreal undiagnosed cancer. For five years now, I have tried to figure out the mystery and …
Read morePublished 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 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”
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