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: Vote Today!
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,” challenged teens who attended the 2010 NMF Annual Conference to take photos throughout the Conference weekend which capture the beauty and richness of Marfan syndrome and related disorders. All teens who attended the Conference had the opportunity to submit one photo to the Image-ination Photo Contest. 15 photos were submitted to the contest. Vote now to determine which lucky teen will win a Flip Ultra Video Camera and be deemed the winner of the 2010 Image-ination Photo Contest. Voting will end Monday, August 9th, 2010, at 9:00AM Eastern Time and the winner will be announced later that day.
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.
27th Annual Conference announced for July 14-17, 2011 in Portland, Oregon
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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.
Marfan Syndrome was featured on Rosie Radio on Sirius/XM on Tuesday, November 10th
Tony Award winning choreographer and dancer Ann Reinking spoke about "In My Hands: A Story of Marfan Syndrome." Visit our special Rosie Radio page to listen to the segment online now.
Please Check the NMF Calendar for upcoming events
8th International Symposium on Marfan Syndrome and Related Disorders. September 11-14, 2010, for Researchers and Clinicians [information]
27th Annual Conference. July 14-17, 2011, Portland, Oregon.
SAVE THE DATE!
NMF Media Contact Information:
Thank you for your interest in Marfan syndrome. For immediate assistance, media may contact Eileen Masciale, Director of Communications, 631-665-2163, publicity@marfan.org
We can arrange interviews with leading experts on Marfan syndrome, as well as with individuals affected by the disorder. Electronic photographs are also available.
Media Kit:
Marfan Syndrome Q & A
Life Expectancy
Aortic Dissection: Facts & Figures
Famous People
Press Releases:
07-01-10 New Diagnostic Criteria for Marfan Syndrome Published in Journal of Medical Genetics: New Guidelines Facilitate Accurate Diagnosis of Life-Threatening – but Treatable – Genetic Disorder
06-14-10 Baylor College of Medicine and University of Texas Science Center at Houston to Host 26th Annual National Marfan Foundation Conference
04-05-10 National Marfan Foundation Benefit to be Held on April 22 at Cipriani 42nd Street
03-16-10 New Coalition Launches Multi-Faceted Campaign to Maximize Impact of New Aortic Disease Diagnosis and Treatment Guidelines from American Heart Association, American College of Cardiology and Nine Other Professional Organizations; TAD Coalition Announces “Ritter Rules” to Heighten Awareness of Risk Factors, Symptoms, Urgency and Diagnosis of Aortic Dissection
03-16-10 From AHA/ACC: New Guidelines Aim to Prevent Unnecessary Death from Thoracic Aortic Disease; Multidisciplinary team of experts weighs in on diagnosis and management
02-01-10 February is National Marfan Awareness Month- Clinical Trial Participants Still Needeed
01-21-10 Gregorio Sicard, MD, to be Honored at Heartworks St. Louis Gala, March 6
07-13-09 Mayo Clinic to host 25th Annual National Marfan Foundation Conference, Aug 6-9, 2009
02-02-09 RENT: Filmed Live on Broadway Helps Raise Awareness and Saves Lives
02-01-09 February is National Marfan Awareness Month
10-06-08 NIH Launches New Web Site for Parents on Medical Research Studies for Children
08-21-08 FoxNews.com posted an important article about Marfan syndrome awareness and Michael Phelps on its website
Archived Press Releases
Pulitzer Prize-winning Series on Aortic Aneurysm and Dissection- Kevin Helliker and Thomas M. Burton, reporters at The Wall Street Journal, were awarded the 2004 Pulitzer Prize for Explanatory Reporting for uncovering and explaining the surprising prevalence of aneurysms. The entire series can be accessed on
The Wall Street Journal Online.
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NMF News Blog
