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Aging & Disability Divergent News Healthcare & Wellness

Elsevier Opens Books, Review Articles to Rare Disease Researchers Starting Feb. 29 – Ehlers-Danlos News

Beginning on Feb. 29, Rare Disease Day, chapters from notable scientific books and clinical review articles covering rare disorders will be available free-of-charge from Elsevier. Source: Elsevier Opens Books, Review Articles to Rare Disease Researchers Starting Feb. 29 – Ehlers-Danlos News

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Aging & Disability Divergent News Healthcare & Wellness

Local News: Summer Fogle: Living with Ehlers-Danlos syndrome (12/31/19) | Nevada Daily Mail

Editor’s Note: This is the first installment in a two-part series. “What is Christmas really about these days?” Summer Fogle asked in a recent interview. “Do we all celebrate as a family surrounded by all the sights, smells, and sounds of Christmas with everything picture perfect like in the books that tell you how to […]

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Aging & Disability Divergent News Healthcare & Wellness

Miss America Winner Camille Schrier: 5 Things to Know About Her

Miss Virginia Camille Schrier was crowned Miss America 2020 on Thursday, December 19 — here are five things to know about the winner …   3. She has Ehlers-Danlos Syndrome Schrier was diagnosed with the rare condition, which affects connective tissues supporting the skin, bones and blood vessels, at age 11. She told VCU School […]

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Aging & Disability Divergent News Healthcare & Wellness

Made in St. Louis: Painter uses art to find healing | Home & Garden | stltoday.com

Two years ago, Jasmine Raskas couldn’t even hold a brush. Raskas has Ehlers-Danlos Syndrome, a rare genetic disease that weakens connective tissue. Since her diagnosis, Raskas, now 25, has painted hundreds of colorful, vibrant pieces under the moniker, Unus Mundus Art, meaning “one world” in Latin. Since the brain surgery she had two years ago, […]

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Aging & Disability Divergent News Healthcare & Wellness

Classical-like Ehlers-Danlos Linked to Newly ID’d Mutation in TNXB Gene

A woman with signs of Ehlers-Danlos led to the discovery of a mutation in the TNXB gene that prevents TNX protein production, causing her rare subtype. Source: Classical-like Ehlers-Danlos Linked to Newly ID’d Mutation in TNXB Gene

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Aging & Disability Divergent News Healthcare & Wellness

The Marfan Foundation Welcomes the Vascular Ehlers-Danlos Community to its 35th Annual Conference, Held in Association with Texas Children’s Hospital

PORT WASHINGTON, N.Y., June 26, 2019 /PRNewswire/ — The Marfan Foundation, in association with Texas Children’s Hospital, will hold its 35th Annual Conference in Houston, July 11-14, 2019, and – for the first time – include a track on Vascular Ehlers-Danlos syndrome (VEDS), a Marfan-related condition. Nearly 75 families with vEDS, which affects about 1 in 50,000 people in the US, are already […]

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Advocates & Activists Aging & Disability Divergent News Healthcare & Wellness

What Is Ehlers-Danlos Syndrome? Jameela Jamil Spoke Up About How Living With It Affects Her

Actor and body positivity advocate Jameela Jamil has been speaking out against the impossible beauty standards imposed on female-identified people for a while now, especially when its related to the entertainment industry. Recently, The Good Place… Source: What Is Ehlers-Danlos Syndrome? Jameela Jamil Spoke Up About How Living With It Affects Her