Connective Issues Winter 2019

eduCATion/AwAreneSS

AORTIC DISEASE AWARENESS DAY

NEW STENT RECOMMENDATIONS

The Marfan Foundation is proud to announce that it is partnering with Timo Söderlund, of Sweden, to lead the worldwide Aortic disease Awareness day on September 19. Timo, a former Ceo who lives with aortic disease, has been incredibly successful in estab- lishing and expanding this life-saving awareness effort. “The participation of hospitals and physicians worldwide is remarkable and we could not be more impressed by the impact Timo has created globally in just a few short years,” said bert Medina, a member of the Foun- dation’s board of directors who made the announcement by video on december 14 at the international Congress Aortic Surgery—peripheral and Venous “How to do it” meeting for cardiac surgeons in Milan, italy. The Marfan Foundation has always focused on life-saving education and awareness. For

in december, the Foundation released a statement from its professional Advisory board (pAb), comprised of leading medical experts on Marfan syn- drome and related conditions, asserting that thoracic endovas- cular aortic repair (TeVAr) and endovascular aneurysm repair (eVAr) are not the optimal treatments for aortic aneurysm and dissection in patients with Marfan and related connective tissue conditions. The pAb indicates that the use of endovascular stent grafts is not recommended for those in our community because of a high risk of complications and a high rate of re-operation. Conventional “open” surgical repair for aneurysms and dissections remains the gold standard and ideally should be performed at highly experi- enced surgical centers. This recommendation is based on data primarily from patients with Marfan, but also may apply to related connective tissue conditions, such as vascular ehlers danlos and Loeys dietz syndromes, as well as familial thoracic aortic aneurysm conditions. More information related to these recommendations and management guidelines for healthcare professionals are available on the Foundation’s website.

AwAreneSS MATeriALS For AorTiC diSeASe AwAreneSS dAy, LiKe THiS, Are AVAiLAbLe For 80 CounTrieS.

nearly 25 years, we have had programs that specifically focus on aortic disease awareness for people with Marfan syndrome, as well as other genetic conditions such as vascular ehlers danlos syndrome and Loeys dietz syndrome. For the past two years, we have been proud to participate in Aortic disease Awareness day to raise awareness for all risk factors. “we know Timo has had help in this undertaking from so many patients, volunteers, and doctors who are leaders in the field and champions for aortic dissection awareness. we look forward to working with partners around the globe to ensure the continued growth of Aortic dissection Awareness day,” said bert. “Timo will be working with us as a valued advisor. Together, we can unite the community, accelerate awareness, and save lives around the world.” Stay connected to Aortic disease Awareness day on its Facebook page. FEBRUARY IS MARFAN AWARENESS MONTH FOLLOW US ON SOCIAL MEDIA TO GET INVOLVED! #AWARENESSFEELSGOOD

12 Marfan.org