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Sixteen geneticists, cardiologists and cardiovascular surgeons from across the country teamed up with local experts from BWH and Children’s Hospital last month at BWH in support of patients with Marfan syndrome. The disease, a hereditary condition, affects connective tissue and manifests itself in many body systems, especially the cardiovascular system.
The multidisciplinary clinical team assessed 50 patients ages 3 to 70 in a free clinic at the Watkins Clinic in the Shapiro Cardiovascular Center as part of 24th annual National Marfan Foundation Conference, sponsored this year by BWH and Children’s Hospital Boston.
“The patients were very grateful to receive expert opinions from different specialists,” said Michael Murray, MD, who co-directs BWH’s Marfan Syndrome/Connective Tissue Disorder Clinic with Michael Singh, MD.
Approximately one in 5,000 people in the U.S. live with Marfan syndrome, and expert treatment is not always readily available. Many people with Marfan syndrome experience an expansion of the aorta, which can cause sudden death without proper monitoring and medication.
“Marfan syndrome causes a unique set of problems, and often, patients can’t get the treatment they need from their local doctor,” Murray said. “For them to be able to come to a free clinic with experts from across the country is truly wonderful.”
In addition to the free clinic at BWH, the two-day conference drew more than 400 patients and family members to the Westin Copley for medical education sessions, and opportunities to network with other patients and families and presentations about new research findings and treatments.
“It was an honor to co-host this conference with Children’s Hospital. Our hope is to continue to provide world class care across the age spectrum for patients with this condition and related conditions,” said Murray.
National Marfan Foundation President and CEO Carolyn Levering thanked BWH and Children’s for hosting the conference. “Our host institutions are among the finest in the country in treating people with Marfan syndrome and related disorders and are at the forefront of Marfan syndrome research,” she said.
Both BWH and Children’s are leading studies on the use of losartan in patients with Marfan syndrome. The study at BWH is for patients over the age of 25 years, and is funded by the American College of Cardiology and the National Marfan Foundation.
Hosting the conference heralds BWH’s continued commitment to patients with Marfan syndrome and related conditions. This commitment will take another step forward with the formal launch in October of a BWH comprehensive multidiscipline Marfan and Related Disease Clinic under the leadership of Michael Singh, MD, in Cardiology and Murray in Genetics.