Bloomberg Philanthropies Commits $5 Million Leadership Gift to NMF.  The NMF announced today that it has received a $5 million commitment from Bloomberg Philanthropies as a leadership gift for its research campaign, Discovering Drug Therapies for Longer and Healthier Lives.  This campaign represents the most ambitious and complex research agenda pursued to date by the NMF.  For more details, click here.

CME Opportunity, Marfan Syndrome 2012: Multidisciplinary Approaches from Childhood to Adulthood. Northwestern Memorial Hospital is pleased to offer a CME program designed to meet the educational needs of physicians, surgeons and other health care professionals who care for pediatric and/or adult patients with Marfan syndrome and related connective tissue disorders on August 4, 2012. For more information and to register visit www.cme.northwestern.edu/conferences.

Marfan Syndrome Diagnosis Survey. The NMF conducted survey found that the primary care doctor (internist, family doctor or pediatrician) was the first to suspect Marfan syndrome in only 25 percent of the patients surveyed.  Because early diagnosis and treatment are so critical to preventing the life-threatening aspect of Marfan syndrome, an aortic tear or rupture, the NMF is urging doctors to become more aware of the outward signs of the condition and know when to refer them to specialists for specific tests required for a diagnosis.  Read more about the survey results here.

Introducing MarfanDX. The NMF has just announced the launch of a new mobile site - MarfanDX - to facilitate the diagnosis of Marfan syndrome and related disorders.  Based on the revised diagnostic criteria for Marfan syndrome published last year, the site is compatible with Droid and iPhone smartphones.  It puts the Marfan syndrome diagnosis directly into the hands of doctors, facilitating an accurate and timely diagnosis and appropriate management.  For more information, click here.  Read the press release.

2012 Annual Conference: Registration is Now Open! Join us in Chicago, IL for the 28th Annual NMF Conference August 2-5. Hosted by Northwestern Medicine and Children's Memorial Hospital. The Annual Conference features programs for people of all ages living with Marfan syndrome and related disorders and their family members. Scholarships available. Register today.

 

  

 

Please check the NMF Calendar for upcoming events

---

 

NMF Media Contact Information:

Thank you for your interest in Marfan syndrome. For immediate assistance, media may contact Eileen Masciale, Consulting 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

 

Press Releases:
05-07-12 Bloomberg Philanthropies Commits $5 Million Leadership Gift to NMF

04-10-12 Bay Shore-Brightwaters Public Library to Present In My Hands: A Story of Marfan Syndrome on May 12

04-10-12 Carolyn Levering named to National Health Council Board of Directors

03-19-12 New survey shows primary care doctor first to suspect Marfan syndrome in only 25 percent of cases

01-23-12 Kevin Blinder, MD, Washington University School of Medicine, to be Honored at Heartworks St. Louis Gala, March 3rd

10-24-11 12th Annual Tommy Tant Memorial Surf Classic Presented by Nautica To Raise Awareness of Marfan Syndrome and Aortic Disease

06-22-11 Shriners Hospitals for Children and Oregon Health & Science University to Host 27th Annual National Marfan Foundation Conference, July 14-17, 2011

04-15-11 National Marfan Foundation Launches Mobile Site to Put Marfan Syndrome Diagnosis Directly into the Hands of Physicians.

04-05-11 National Marfan Foundation Benefit to be Held on April 7 at Cipriani 42nd Street.

02-01-11 Keith Bridwell, MD, Chief of Spine Surgery in the Department of Orthopaedic Surgery and Asa C. and Dorothy W. Jones Professor of Orthopaedic Surgery, and Lawrence Lenke, MD, Jerome J. Gilden Endowed Professor of Orthopaedic Surgery, Washington University School of Medicine, are the 2011 recipients of the National Marfan Foundation’s Hero with a Heart Awards.

08-12-10 Alan Braverman, MD, named chair of the National Marfan Foundation's Professional Advisory Board

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.

---

Check out our NMF News Blog

---

Have Heart 2012 Campaign
February is National Marfan Awareness Month and we’re trying to raise $60,000 in our 2012 Annual Have Heart Campaign to expand our outreach and education work all year long.
More...

Happy Holidays 2011
We wish you health and happiness in the new year. Start 2012 generously and donate to the National Marfan Foundation.
More...

Closed

More...

Emergency Information Packet
Be prepared! New tool helps you compile infomation you will need in the event of an emergency.
More...