Impact of Health Care Costs in People with Marfan Syndrome: Participate in Research
Boston University is conducting a study to determine the impact of health care costs in people living with Marfan syndrome.  Share your experiences by participating in a research survey from the comfort of your home.  Click here for more information.

February is National Marfan Awareness Month
This month is a great time to increase your efforts to support the NMF’s mission by helping to spread awareness and help fundraise for NMF education and support programs. In addition, you are encouraged to recognize Marfan Awareness Month by being screened for the atenolol vs. losartan clinical trial. Only 115 more participants are needed.

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."  

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.

Health Care Reform
As the national discussion continues, we ask our supporters to read the NMF Position Statement on Health Care Reform and contact your elected officials about this issue of vital importance to the Marfan and related disorders community.Family Health History

The NMF has created a Family Health History template to help you compile important health information about you and your family members to save time during early diagnostic appointments.  It can also be used to determine other health risks not related to Marfan syndrome. 

Marfan Syndrome A - Z
New children’s picture book, "Marfan Syndrome A to Z" now available from the National Marfan Foundation. The purpose of the book is to normalize a child’s experience with the disorder while providing educational opportunities and a gateway for conversation between parents and children.

GenTAC Registry:  Participate in Research
The GenTAC Registry will collect clinical data and samples on patients with aneurysms and dissections that are caused by genetic alterations.

Please Check the NMF Calendar for upcoming events

  April 22, 2010
  Cipriani 42nd Street    More information
  New York, NY
 

The NMF Celebrates Silver Anniversary Conference with Education, Warmth, and Community.  Read the 2009 NMF Conference Recap with information about patient assessments, educational sessions, social events, child and teen programs and the Conference Scholarship Program. 

Check back here in February, 2010 for information on the 2010 NMF Conference in Houston, TX, July 8-11. 

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:

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