This Sunday, Feb. 28, is the third annual (and second global) Rare Disease Day. In addition to public events planned across the U.S., Europe, and elsewhere to raise awareness of specific diseases and of rare diseases in general, there are video and photo contests open through March. The video that happened to be on the home page of the official website yesterday, The Boy Beneath the Bandages, by a woman whose young son has recessive dystrophic epidermolysis bullosa, is simple and effective. I thoroughly recommend last year’s contest winner, too, also very simple, cheeky, and informative. Bet you won’t forget the name phenylketonuria afterwards.
Among the many great things happening on Sunday—including an exhortation for everyone to wear jeans in honor of genes and the Progeria Research Foundation’s Find the Other 150 campaign—will be the premiere of a new Discovery Health TV series called Disease Detectives (8 p.m. EST). Like a sort of House in real life, it follows staff and patients in the National Institutes of Health’s Undiagnosed Diseases Program as they try to figure out what’s going wrong in the bodies of people who are losing hope that doctors will ever reach a diagnosis. Some of them have rare diseases; some have diseases never seen before. I’ve read a few articles and case studies and attended a couple of presentations by the UDP staff, and it never ceases to amaze me what can happen to the human body and how dedicated people can be to both solving scientific mysteries and helping those who’re losing hope. There are a few preview clips (with ads) at https://health.discovery.com/videos/disease-detectives/
Resources:
– https://rarediseaseday.us/
– https://www.rarediseaseday.org/
– https://rarediseases.info.nih.gov/RareDiseaseDay.aspx
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