Marfan Foundation’s Annual Conference to Include vEDS Syndrome

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by Mary Chapman |

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Marfan Foundation

For the first time, The Marfan Foundation’s annual conference will include topics concerning vascular Ehlers-Danlos syndrome (vEDS), a Marfan syndrome-related condition.

In association with Texas Children’s Hospital, the foundation’s 35th conference will be July 11-14 in Houston. The meeting offers attendees an opportunity to learn more about Marfan syndrome and similar disorders, hear the latest research, and connect with patients who are on the same medical journey.

The conference will include a research update on vEDS by one of the nation’s leading disease experts, Peter Byers, MD, of the University of Washington Medical Center.

”We welcome the vEDS community to our annual conference and want them to know that The Marfan Foundation is a home for them, and a place for hope, especially given the recent news about the 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,” Josephine Grima, PhD, chief science officer, The Marfan Foundation, said in a news release.

Acer Therapeutics’ celiprolol (Edsivo) is currently approved in the United States for the treatment of hypertension and effort-induced angina pectoris. In 2015, the U.S. Food and Drug Administration (FDA) granted Edsivo orphan drug designation for the potential treatment of vEDS.

The conference opens with a patient health fair, followed by retrospective presentations covering 35 years of progress in the diagnosis and treatment of Marfan and conditions such as vEDS. Breakout sessions will review various disease aspects, while final sessions focus on quality of life issues, and age-specific coping strategies. Special programs are provided for children and teens. Go here for complete conference details.

“Our annual conference is a life-changing experience for people with genetic aortic conditions such as vEDS, because most do not have access to medical experts nearby,” said Michael Weaver, president and chief executive officer of the foundation.

“With rare conditions such as Marfan and vEDS, many have never met another person with the same diagnosis. The medical information they gain and the support network they forge at our annual conference empowers them to advocate for state-of-the-art care, tap an emotional network of friends, and give voice to the importance of ongoing clinical research,” Weaver said.

Excluding lodging, standard registration is $425 per person. Visit the website to register.

According to The Marfan Foundation, some 75 vEDS families have already registered for the event.

Ehlers-Danlos syndromes, which affect about one in 50,000 U.S. residents, are a group of connective tissue disorders characterized by hypermobility, skin flexibility, and tissue fragility. Vascular EDS is the most lethal form of the disease. vEDS patients have extremely fragile blood vessels and organ walls, and are highly susceptible to ruptures.

Marfan syndrome is a genetic disorder that affects the body’s connective tissue as well. The syndrome is caused by a defect or mutation in the gene that tells the body how to make the protein fibrillin-1.