The 25th Annual Conference on Marfan Syndrome and Related Disorders will take place August 6-9, 2009 at Mayo Clinic in Rochester Minnesota in collaboration with the National Marfan Foundation (NMF). The conference is a fully-integrated four-day event that includes more than 70 workshops, support groups and educational programs for people affected with Marfan syndrome and related disorders and their families;a CME program for medical professionals;concurrent programs for children and teens;and a formal meeting of the NMF Professional Advisory Board (PAB), the nation's leading specialists in the disorder, to discuss the latest advancements in research, treatment, and diagnostic criteria. In addition, Mayo Clinic will host a free clinic where conference participants will receive on-site medical testing and assessment by PAB members, Mayo specialists and invited guest physicians. Mayo Clinic is an enrollment site for the trial of Beta Blocker Therapy (atenolol) vs. Angiotensin II Receptor Blocker Therapy (losartan) in Individuals with Marfan Syndrome. Information on the trial will be available at the conference for consumers and medical professionals. The NIH-sponsored National Registry of Genetically Triggered Thoracic Aortic Aneurysms and Cardiovascular Conditions (GenTAC) will also be on-site to enroll eligible participants in a registry to collect clinical data and samples on patients with aneurysms and dissections that are caused by genetic alterations.

Public Health Relevance

25th Annual National Marfan Foundation Conference Project Narrative The 25th Annual Conference on Marfan Syndrome and Related Disorders will take place August 6-9, 2009 at Mayo Clinic in Rochester Minnesota in collaboration with the National Marfan Foundation (NMF). The conference promotes quality health care and education for individuals with Marfan syndrome and related disorders and their families, many of whom are at cardiovascular risk, through a medical clinic for patient assessment;a comprehensive program of workshops, support groups, and educational sessions;and a CME for medical professionals.

Agency
National Institute of Health (NIH)
Institute
National Heart, Lung, and Blood Institute (NHLBI)
Type
Conference (R13)
Project #
1R13HL097481-01
Application #
7748063
Study Section
Special Emphasis Panel (ZHL1-CSR-N (M1))
Program Officer
Mitchell, Phyllis
Project Start
2009-07-01
Project End
2010-06-30
Budget Start
2009-07-01
Budget End
2010-06-30
Support Year
1
Fiscal Year
2009
Total Cost
$28,000
Indirect Cost
Name
Mayo Clinic, Rochester
Department
Type
DUNS #
006471700
City
Rochester
State
MN
Country
United States
Zip Code
55905