PORT WASHINGTON, N.Y., June 26, 2019 /PRNewswire/ — 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 – include a track on Vascular Ehlers-Danlos syndrome (VEDS), a Marfan-related condition. Nearly 75 families with vEDS, which affects about 1 in 50,000 people in the US, are already registered to attend.
A research update on vEDS is among the featured talks slated for 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 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,” said Josephine Grima, PhD, Chief Science Officer, The Marfan Foundation.(The Foundation statement on this FDA action can be read here.)
The annual conference calls upon world-renowned doctors and researchers to share updates on new medical and genetic research, as well as up-to-date diagnosis and treatment information. Participants 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.
“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. 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,” said Michael Weamer, President and CEO, The Marfan Foundation.
The Annual Conference will take place at the JW Marriott Houston (5150 Westheimer Road, Houston). Registration is still open. Click here to register.
Conference has Diverse Offerings
The conference begins with a patient health fair on July 11-12, when people who have a Marfan syndrome, vEDS, Loeys Dietz, or a related connective tissue condition diagnosis, or who are seeking a diagnosis, have an opportunity for individualized discussions with medical experts (by appointment only).
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, 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 provided for children and teens, giving younger members of the community opportunities to strengthen self-esteem and peer support from others who have the same diagnosis.
Complete conference details are available at Marfan.org/Conference19.
The Marfan Foundation and Marfan Syndrome
Marfan syndrome is a life-threatening genetic disorder of the body’s connective tissue. It affects the heart and blood vessels, the bones and the eyes. Knowing the signs is the key to early and accurate diagnosis and life-saving treatment.
The Marfan Foundation creates a brighter future for everyone affected by Marfan syndrome and related disorders. It works tirelessly to advance research, serve as a resource for families and healthcare providers, and raise public awareness.
Learn more and get involved at marfan.org.
The Marfan Foundation
SOURCE The Marfan Foundation
– Ehlers-Danlos Syndrome| #EDS –
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