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A new publication in the Journal of Medical Genetics outlines important new revisions to the diagnostic criteria for Marfan syndrome.   More...
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Receiving Connective Issues Has Never Been Easier
Connective Issues is the National Marfan Foundation's acclaimed newletter published three times per year, in the Fall, Winter, and Spring.  Connective Issues is your ticket to the most current information about the NMF, Marfan syndrome and related disorders, and the people who make up this wonderful and virbant community. Find out your options for receiving Connective Issues.  You can also view additional content in the Winter 2010 Supplement.

Alan Braverman, MD, Named Chair of the NMF’s Professional Advisory Board
Alan Braverman, MD, Director of the Marfan Syndrome Clinic at Washington University Medical Center in St. Louis, has been named Chair of the NMF’s Professional Advisory Board (PAB).  Dr. Braverman, who has been a valuable member of the PAB since 1999, is both professionally and personally committed to the NMF; he lost his father to Marfan syndrome and has a brother and nephew who are affected with the condition.  Read the press release.

2010 Revised Ghent Nosology for Marfan Syndrome
The diagnostic criteria for Marfan syndrome have been revised based on scientific meeting of Marfan syndrome specialists.  Instructions for healthcare providers are now available.  Read the press release. 

Image-ination Photo Contest: We Have a Winner!
Over 90 teens attended the 2010 NMF Conference in Houston, Texas. On Friday, July 9th, 2010, the teen group was challenged by the NMF and Positive Exposure, a non-profit organization that “challenges the stigma associated with difference by celebrating the beauty and richness of human diversity" to take photos of each other throughout the Conference weekend which captured the beauty and richness of Marfan syndrome and related disorders to submit to the Image-ination Photo Contest. 15 photos were submitted. 197 people voted and the winner is Jared Zimmerman. Click here to see the winning photo as well as the 2nd and 3rd place photos.

Healthcare Reform Bill
Congress passed the Patient Protection and Affordable Care Act, and President Obama signed it on March 23, 2010.  Find out the timeline for implementation and what it might mean for the Marfan community.

 SAVE THE DATE: 27th Annual Conference: July 14-17, 2011, Portland, Oregon.   conference 2011 logo.jpg

Make an appointment for a medical assessment at the Marfan and Related Disorders Clinic.  Bring your children and teens for a special fun-filled and educational weekend.  Participate in a newly expanded program for young adults.  Share experiences with others in the supportive environment that is unique to NMF conferences. See what you've been missing, view videos of the 2010 Conference, child and teen programs and medical assessments. See You in Portland!

 

 

 

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The NMF gratefully acknowledges Rick Guidotti of Positive Exposure and Timothy D. Joyce for their generosity in providing the photography for this website.
The National Marfan Foundation is dedicated to saving lives and improving the quality of life for individuals and families affected by Marfan syndrome and related disorders.
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