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…
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….
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…
