The Ehlers-Danlos National Foundation’s focus is to provide emotional support to patients and their families, to educate health professionals and researchers about Ehlers-Danlos syndrome (EDS), and to teach patients how to deal with their individual problems. EDNF distributes reprints of articles on EDS and related issues. Visit EDNF
EDS Network Cares is a non-profit organization established and driven by EDS patients and family members who share a belief in, and a passion for research and education. This all-volunteer network is led by devoted volunteers whose primary goal is to make a difference in the lives of people who are suffering each and every day from Ehlers-Danlos Syndrome. Our mission is to help improve the quality of life for people who have Ehlers-Danlos Syndrome through research, education and support. Visit EDS Network CARES
GenTAC is a national registry where doctors, people with genetic disorders, and their families unite to promote cardiovascular health and help prevent aortic aneurysm—a disorder that weakens the main artery from the heart. The registry is sponsored by the National Heart, Lung, and Blood Institute and the National Institute of Arthritis and Musculoskeletal and Skin Diseases. The goal of GenTAC is to establish a registry of patients with genetic conditions that may be related to thoracic aortic aneurysms and to collect medical data
The International Registry of Acute Aortic Dissections (IRAD) is a consortium of research centers that are evaluating the current management and outcomes of acute aortic dissection. It was established in 1996, and currently has 24 large referral centers in 12 countries participating in the registry. The main purpose of IRAD is to assess the etiological factors, modes of presentation, clinical features, treatment, and hospital outcomes of patients with acute aortic dissection around the world. IRAD is represented on the TAD Coalition by Kim Eagle. MD. Visit IRAD
The John Ritter Foundation was created in early October 2003, just weeks after John’s sudden death of an aortic dissection. The Foundation was formed by his widow, Amy Yasbeck, and their family for the purpose of receiving donations in honor of John’s life. The original fund was donated in its entirety to the University of Southern California, John’s beloved alma mater. The scope of the Foundation was expanded in 2004 to specifically focus on Aortic Disease Education.
The John Ritter Foundation is dedicated to promoting knowledge of aortic aneurysm and dissection through research and education. Its goal is to enlighten the general public while creating an open exchange of information at the highest levels of cardiothoracic expertise. Its mission is to raise awareness of Aortic Disease, its detection, treatment and genetic predisposition. Visit JRF
The Loeys-Dietz Syndrome Foundation (LDSF) is a 501(c) 3 nonprofit organization dedicated to bringing greater awareness to Loeys-Dietz syndrome (LDS) by encouraging education, fostering research and providing support for those impacted by LDS. Visit LDSF
The Marfan Foundation, founded in 1981, is a non-profit voluntary health organization dedicated to saving lives and improving the quality of life for individuals and families affected by Marfan syndrome and related disorders. It accomplishes this mission through Research and Advocacy, Education, and Support.
The Marfan Foundation, which convened the TAD Coalition, has been focusing on the problem of undiagnosed and misdiagnosed aortic dissections for nearly two decades. Visit The Marfan Foundation
Nebraska Methodist Health System (NMHS), a leading integrated health care delivery system headquartered in Omaha, Neb., brings together health care organizations to provide quality health care services throughout the Midwest. Major non-profit affiliates include Methodist Hospital, Methodist Hospital Foundation, Jennie Edmundson Hospital, Methodist Physicians Clinic and Nebraska Methodist College – The Josie Harper Campus.
NMHS initiated systemic change in the evaluation of chest pain and diagnosis of thoracic aortic dissection in its emergency departments after 19-year-old Tyler Kahle died from an undetected aortic dissection in 2002. An award-winning video, made in cooperation with Tyler’s family and distributed to help other providers and institutions understand and act on the knowledge that aortic dissection can occur at any age, is one of the resources available at www.bestcare.org/Tyler. Visit NMHS
The John Ritter Research Program (JRRP) in Aortic and Vascular Diseases at The University of Texas Health Science Center at Houston (UTHealth) works to prevent premature deaths due to thoracic aortic disease by improving diagnosis and treatment of thoracic aortic disease through research. In addition, the JRRP provides support to individuals who have been recently diagnosed with disease, have a family history of thoracic aortic disease or have lost a loved one due to an aortic dissection. It was founded in September 2010 by Dianna Milewicz, MD, PhD, professor and the President George H.W. Bush Chair in Cardiovascular Research at UTHealth, in collaboration with John Ritter’s widow, Amy Yasbeck, actress, writer and aortic health advocate. The JRRP is being represented on the TAD Coalition by Dianna Milewicz, MD, PhD. Visit JRRP
The mission of the Turner Syndrome Society of the United States is to create awareness, promote research and provide support for all persons touched by Turner syndrome. One of its four objectives is to educate the TSSUS community as well as the larger community about the risk for aortic dissection In Turner syndrome. Visit TSSUS
Kim Eagle, MD is the Albion Walter Hewlett Professor of Internal Medicine and director of the Cardiovascular Center at the University of Michigan Health System. He graduated from Oregon State University in 1976 and from Tufts University Medical School in 1979. He completed his residency and chief residency in Internal Medicine at Yale-New Haven Hospital from 1979 to 1983 followed by research and clinical fellowships in cardiology and health services research at Harvard Medical School and The Massachusetts General Hospital from 1983 through 1986. From 1986 to 1994, Eagle served The Massachusetts General Hospital where he was promoted to associate director of Clinical Cardiology and associate professor of Medicine at Harvard.
Eagle has served the American College of Cardiology as a director of numerous extramural programs, a member of its Guideline Task Force, chair of the Task Force for the Development of Performance Measures in Cardiovascular Care, annual Scientific Sessions Program Committee, and is the editor of the American College of Cardiology’s Cardiosource Review Journal. He served its Board of Trustees from 2001-2005. He served on the National Heart, Lung and Blood Institute’s External Advisory Committee from 2002-2006, and was named study chair of its Genetic Causes of Aortic Disease initiative in 2006.
Luke Hermann, MD is as Associate Professor of Emergency Medicine at Mount Sinai School of Medicine and is also the Director of the Chest Pain Unit for the Mt. Sinai Department of Emergency Medicine. Dr. Hermann’s research interests are focused in cardiology and currently include several studies toward improving risk stratification of potential acute coronary syndrome patients. In addition, Dr. Hermann is currently a member of the American Academy of Cardiology writing committee for Thoracic Aortic Disease.
Loren Hiratzka, MD chaired the TAD guidelines writing committee for the AHA and ACC which also included 8 other co-sponsoring organizations, a 9th endorsing organization, with 2 additional specialty organization writing committee members. He is a practicing cardiothoracic surgeon with Cardiac, Vascular and Thoracic Surgeons, Inc., and is the medical director of cardiac surgery for TriHealth, Inc. (Bethesda North and Good Samaritan Hospitals) in Cincinnati, OH. He has served on several AHA and ACC committees and is past chair of AHA’s Council on Cardiovascular Surgery and Anesthesia, Council Operations Committee and the You’re the Cure Advocacy Ambassador Committee. He also serves on the Society of Thoracic Surgeons Workforce on National Databases.
Debra Kahle McMillan is a former teacher who has become a patient advocate for families affected by aortic aneurysms and dissections. She became a spokesperson for universal adoption of an aortic dissection bundle after the death of her teenage son from a dissection.
Dianna Milewicz, MD, PhD is the President George H. W. Bush Chair in Cardiovascular Medicine at the University of Texas Medical School at Houston. She is an internist with a subspecialty in human genetics. Her research focuses on identifying genetic variations that predispose individuals to vascular diseases, such as aortic aneurysms and dissections.
Milewicz is professor and director of the Division of Medical Genetics and the M.D./Ph.D. Program in the Medical School and the Graduate School of Biomedical Sciences (GSBS). She was vice chair of the Department of Internal Medicine for four years. She was named a Doris Duke Distinguished Clinical Scientist in 2002, was elected a fellow of the Executive Leadership in Academic Medicine Program in 2004, and received the Distinguished Professional Woman Award from the health science center’s Committee on the Status of Women in 2005.