Published November 25, 2024 by NORD
On average, it can take five years – or more – for a rare disease to be correctly diagnosed. For Sharon Drennan and her son Rob, it took 15. “Rob …
Continue reading “A 15-Year Diagnostic Odyssey”
Read morePublished November 20, 2024 by NORD
If there is any message that Kate Kelly could share with her fellow rare disease caregivers, it’s this: You’re not alone. “There are moments when you get caught up in …
Continue reading “Rare Disease Caregivers: You’re Not Alone”
Read morePublished October 16, 2024 by NORD
By Curtis Mar The medical marvel of anesthesia was demonstrated for the first time 178 years ago at Massachusetts General Hospital. That day is commemorated today by World Anesthesia Day. …
Read morePublished September 4, 2024 by NORD
By Sydney Collier I was told at seven years old I wasn’t supposed to be alive. It sounds dramatic, but it’s the truth. An MRI told us it was true: …
Continue reading “Beyond Expectations: A Paralympian Equestrian Beats the Odds to Achieve Her Dream”
Read morePublished 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 27, 2024 by NORD
By Tanita A. My name is Tanita and I am an African-American woman living with Huntington’s Disease. I did not have a family history of Huntington’s Disease; I am the …
Continue reading “We Exist: Tanita’s Experience as a Black Woman with Huntington’s Disease”
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 …
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