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.
The Annual Conference will take place at the JW Marriott Houston (5150 Westheimer Road, Houston). Registration is still open. Click here to register.
The Foundation’s conference gives attendees an opportunity to learn from leading doctors and researchers from around the world, as well as hear about new medical and genetic research firsthand. Participants will also learn strategies for improving their quality of life and have numerous opportunities to network with other people who are also living with the same genetic aortic condition that they have.
“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 at home. In addition, most of them have never met another person with the same diagnosis. The medical information they gain and the support network they have access to at our Annual Conference empowers them and gives them the foundation to live a better life,” said Michael Weamer, President and CEO, The Marfan Foundation.
A research update on vEDS is one of the featured talks during the general medical session. The presentation will be given by one of the country’s foremost experts on the condition, Peter Byers, MD, University of Washington Medical Center. Workshops that focus on vEDS will be offered throughout the weekend.
“We are proud to welcome the vEDS community to our Annual Conference and give them a home and a place for hope, especially given the recent news about the FDA’s 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,” said Josephine Grima, PhD, Chief Science Officer, The Marfan Foundation.(The Foundation’s statement on this FDA action can be read here.)
Conference has Diverse Offerings
The conference begins with a patient health fair on July 11-12, when people who have a diagnosis or suspect that they have Marfan syndrome, vEDS, Loeys Dietz, or a related connective tissue condition have an opportunity to have individualized discussions regarding their condition with medical experts (by appointment only).
The official kick-off of the conference is the Victory Party on the afternoon of July 12, followed by a welcome dinner and awards ceremony that evening.
General conference sessions are on July 13, with medical presentations that feature a look back at 35 years of progress in the diagnosis and treatment of Marfan and related conditions and insights into what lies ahead. The afternoon features small group breakout sessions on various aspects of Marfan, vEDS, and Loeys Dietz syndrome, which are led by medical experts on the conditions. Sunday breakout sessions focus on quality of life issues and coping strategies for different age groups.
Special programs are planned for children and teens, giving younger members of the community opportunities to build their self-esteem and garner peer support from others who have the same diagnosis as they do.
Complete conference details are available at Marfan.org/Conference19.
The Marfan Foundation is a nonprofit organization that saves lives and improves the quality of life of individuals with genetic aortic and vascular conditions including Marfan, Loeys-Dietz, and Vascular Ehlers-Danlos syndromes. Our vision is a world in which everyone with genetic aortic and vascular conditions can live their best life.