G. Scatterlight·Feb 28Its Rare Disease Day.Come on you didn’t expect a blogger like me to not post today, did you?
InNew Writers Welcomebydan brotzel·May 10, 2025‘My Child’s Condition is a Puzzle of Unknown Pieces’Children like Aeron have diseases so rare they sometimes don’t even have a name — and parents have to get together to work on the etiology…A response icon2A response icon2
Lucy Holland·Feb 25, 2025How Lab-Grown Intestines Are Changing Rare Disease ResearchScientists grow mini-gut models from patients to study Hirschsprung’s disease, offering new insights and hope for personalised treatment.
WeTrials Inc.·Feb 29, 2024Rare Disease Day: A Global Movement for ChangeEvery year, on the last day of February (29th in leap years), the world comes together to recognize Rare Disease Day. This international…
Andy Hunt·Feb 29, 2024Shots Anyone?Sometimes you have to do something that makes a child cry even though it is good for them. That’s why I make Ella watch Dallas Cowboys’…
Stephen V. Smith·Feb 28, 2024Rethinking the Wind“And the wind that blows the candles out, well it also fans the flame.” This is a line from one of my favorite singer/songwriters, Pierce…
Will Greene·Feb 24, 2024Rare genetic disease can strike your family tooWhen our son was diagnosed in early 2022 with Prader-Willi syndrome (PWS), a rare and serious genetic disease with a frightening prognosis…A response icon1A response icon1
InHealth decodedbyInvitae® (a Labcorp company)·Feb 22, 2024Rowan’s story: How genetic testing for a rare condition brought answers and communityBaby Rowan’s seizures mystified his doctors until genetic testing revealed their source and led his family to a life-changing community
Brandy G. Robinson·Feb 11, 2024Unveiling the Zebra: A Raw Journey Through Rare Disease and Resilience — A Patient Story of Brandy…In support of Rare Disease month, I am providing my patient story in a raw, unedited and authentic narrative. We are called zebras (people…
fran rooks·Sep 30, 2023Shocking Rare Diseases!A rare disease is defined as a disease that affects fewer than one in 200,000. Among the numbers, there are 300 million people who have…A response icon1A response icon1
