7-Year-Old Enters Triathlons to Treat His Own Rare Disease (ROHHAD)
7-year-old Jake Vella enters triathlons to keep his weight down. He has a rare disease called ROHHAD that saw he weight gain over 20 lbs in 6 months, despite eating only salads.
Actor Gino Anthony Pesi from the TV show “Shades of Blue” and the movie “42” stated in an interview with Variety that after years of pain and suffering, he began to suspect he had a rare disease — acromegaly.
At Rare Disease in Washington DC, we talked with Brian Wood about the years of being unable to properly get a diagnosis of extra adrenal pheochromatocytoma.
Actor Richard Hatch, star of the 80s TV show ‘Battlestar Galactica’ has passed away following his battle with stage 4 pancreatic cancer.
OPKO Health announced their phase 3, double-blind, placebo-controlled study investigating long-acting human growth hormone product (hGH-CTP) in adults with growth hormone deficiency (GHD) did not meet its primary endpoint (change in trunk fat mass).
Video highlights from the Rare Diseases Heroes Event in Arlington, VA.
Stay At Home Chef Rachel Farnsworth took some time away for posting cooking tips to address the fact that she has Addison’s disease and people should not judge her by her looks
In this interview during the Rare Disease Heroes Award Ceremony, Paul Thornton, MD, of Cook Children's in Fort Worth TX explains the pathophysiology of congenital hyperinsulinism as well as how it is currently treated. Dr Thornton also discusses some future therapies that are begin developed for this rare condition.
In this interview during the Rare Disease Heroes Award Ceremony, Lee and Zachary Parker talk about Zachary's diagnosis of hyperinsulinism
The Rare Disease Heroes Award recognizes and celebrates those hospitals that are advancing the management of rare diseases.
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