It's amazing to see the world-renowned medical experts interact with patients like close friends each year at the family conference...This demonstrates how warm, inclusive, and accessible this community is.
Port Washington, NY (PRWEB) May 01, 2013
The National Marfan Foundation and Cedars-Sinai are co-hosting the 29th Annual Family Conference on August 1-4, 2013. This conference enables people with Marfan syndrome and related connective tissue disorders, and their families, to meet leading Marfan syndrome researchers and physicians and learn about new medical and genetic research firsthand. Nearly 500 registrants are expected, including close to 100 teens and 100 children, ages 5-12.
Dr. Robert Siegel, Director of the Cardiac Noninvasive Laboratory at Cedars-Sinai Heart Institute and Dr. Ora Gordon, Director of the GenRISK Adult Genetics Program at Cedars-Sinai, are spearheading the conference for the host institution.
“Our annual family conference gives affected people and their families an opportunity to learn about Marfan syndrome and related disorders and connect with other people who have these conditions,” said Carolyn Levering, president and CEO of the Foundation. “In addition, we offer free patient assessments for attendees, particularly those who don’t have access to Marfan syndrome experts at home. This year, we are pleased to be able to help even more people by accommodating Spanish-speaking members of the Marfan syndrome and related disorders community. As a result, more people can benefit from the life-saving information available throughout the event.”
Conference has Family Focus
The Foundation’s Annual Family Conference begins with the patient assessments on August 1-2 at Cedars-Sinai Medical Center in Los Angeles. Conference registrants who have a diagnosis or suspect that they have Marfan syndrome or a related connective tissue disorder can be evaluated by medical experts from all over the country (by appointment only). General conference sessions, which will be held at the Loews Hollywood Hotel beginning August 3, feature medical presentations and a panel discussion led by researchers and physicians who have special expertise in Marfan syndrome and related disorders. They will address a range of topics, including cardiac, orthopedic and ocular issues, as well as the latest research news.
After the general session, conference attendees can attend small-group workshops about specific medical concerns led by physicians and other medical professionals. On August 4, workshops about psychosocial concerns will be offered.
“It's amazing to see the world-renowned medical experts interact with patients like close friends each year at the family conference,” said Jennifer Buffone, LSCW, Director of Support Services and Volunteer Development. “The doctors see patients at the free clinic one day, answer patient questions in small group workshops the next day, then socialize with the families during meals. This demonstrates how warm, inclusive, and accessible this community is.”
The teen program and children’s program offer fun, age-appropriate activities; however, the true value of the conference for the Foundation’s youngest members comes from the self-esteem-building activities, peer support and new friendships with peers who face the same medical challenges.
The Foundation offers scholarships to first-time attendees based on financial need and priority is given to those who do not have access to specialty Marfan care at home and who have never attended an NMF Conference before.
Debut of Spanish Language Track
Marfan syndrome affects 1 in 5,000 people, both men and women equally, of every ethnicity and race. To better serve the Hispanic community, the Foundation will offer a Spanish-language track for the first time at the conference. Spanish-speaking physicians will lead medical workshops on understanding your diagnosis of Marfan syndrome or a related disorder, cardiac issues, and managing your connective tissue disorder. Spanish-speaking members of the Marfan community will facilitate psychosocial workshops about coping with Marfan syndrome and related disorders and understanding medical insurance and disability. A Spanish-language support group for parents will also be offered. All general sessions, along with teen and children’s programs, will offer either translation technology or Spanish-speaking leaders or volunteers to ensure that the language is accessible to all attendees.
Marfan Syndrome and the National Marfan Foundation
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 National Marfan Foundation creates a brighter future for everyone affected by Marfan syndrome and related disorders. We work 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.
To obtain additional information about the conference, scholarships and registration, please call the NMF at 800-8-MARFAN or log on to http://www.marfan.org.