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…
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…
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…
