The Marfan Foundation Adds Vascular Ehlers-Danlos Syndrome Division

The Marfan Foundation, which saves lives and improves the quality of life for people with Marfan, Vascular Ehlers-Danlos (VEDS), Loeys Dietz, and other genetic aortic conditions, is expanding with a new division dedicated to programs and support services for VEDS. The Foundation has named Katelyn Wright, a highly regarded patient advocate in the VEDS community, director of the new…

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Working With Your School Nurse

young girl with medium brown hair and glasses with VEDS smiling at the camera

For parents of a child with a connective tissue condition like VEDS, worrying is a daily habit. The beginning of a new school year is especially stressful. Not only do you and your family have to get back into the routine, but you and your child also have to “break in” a new teacher and sometimes a new school…

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Recording of Conference Medical Presentations Now Available

This year, for the first time, The Marfan Foundation livestreamed the medical presentations that were featured in the Annual Conference general session. Now, the recordings of these presentations are available – for free. The presentations that comprised the general session we think were most relevant to the VEDS community were: FDA Warnings and Recalls – Shaine Morris, MD, Pediatric…

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

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 – a track that focuses solely on Vascular Ehlers-Danlos syndrome (VEDS), a condition related to Marfan, is offered. Nearly 75 families with VEDS, which affects about 1 in 50,000 people in the US, are already registered….

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The Marfan Foundation Statement on Celiprolol

Statement from The Marfan Foundation with respect to FDA rejection of celiprolol for exclusive use in treatment of individuals with Vascular Ehlers-Danlos syndrome to prevent or control aneurysm, dissection, and rupture of major arteries On June 25, 2019, the FDA announced that it has rejected Acer Therapeutics’ application for exclusive use of the third generation beta blocker celiprolol in…

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