e fan Foundation (e Foundation ) is a heal advocacy organization. e Foundation does not provide medical advice or treatment. We are not a heal care provider. e Foundaiton provides contact information for heal care providers who are known to have seen patients wi fan syndrome and related disorders. e Foiundation. e fan Foundation Ads $675,000 in New Research GrantsOne Fellowship, One Early Investigator, Four Faculty, and One Clinical Grants Aded: 2: First International Advisor Added to Foundation BoardWe are taking an important step in advancing our international efforts. 30. International E3 Summit: Educating, Empowering, and Enriching Our Community. For e first time in its nearly 40-year history, e fan Foundation is offering its community an incredible ree-week program featuring medical experts from all over e world on an array of topics related to e diagnosis and treatment of fan syndrome, Loeys-Dietz syndrome, VEDS (Vascular Ehlers-Danlos. 15, · e fan Foundation and VASCERN, e European Reference Network, are pleased to announce at registration is now open for e first-ever E 3 International Summit: Educating, Empowering, and Enriching Our Community. e online event will provide unique access to presentations and live question and answer sessions on fan, Loeys-Dietz, VEDS (vascular Ehlers-Danlos), . ese meetings are held at several-year intervals to allow time for sufficient progress and e assessment of new advances and eir impact. Scientific advances presented at ese meetings included discovery of e gene at causes fan syndrome. e fan Foundation and VASCERN, e European Reference Network, are powering e first-ever E3 International Summit: Educating, Empowering, and Enriching Our Community. e online event will provide unique access to presentations and live question and answer sessions on fan, Loeys-Dietz, VEDS (vascular Ehlers-Danlos), Stickler syndrome. Here is a complete listing of all resources we offer for free to patients and families. ese materials provide extensive information about fan syndrome and related disorders to help you understand your diagnosis. You also want to share em wi your heal care providers. If you have questions, please contact our help center or call 800-8- FAN, ext. 126.Please check back regularly. Endovascular Repair in fan Syndrome Patients. e Professional Advisory Board of e fan Foundation is in agreement wi e Expert Consensus Document on e Treatment of Descending oracic Aortic Disease Using Endo-Vascular Stent-Grafts (Ann orac Surg 2008.85:S1-41) and e American Heart Association (AHA) guidelines entitled Surgical Management of Descending oracic . 1995, ust: EMSN meeting in Norway, TRS centre, Oslo. 1996, ust: 4 International Symposium on fan Syndrome in Switzerland, Davos wi e participation of patients and round table discussions wi dors and patients. e EMSN and IFMSO meetings were held after e symposium. 1997, ust: EMSN meeting in Den k, Billund. e fan Foundation is a voluntary, non-profit organization dedicated to e support and education of people affected by fan syndrome and related connective tissue disorders. Families and individuals affected by fan syndrome, an inherited disorder of e connective tissue at affect e skeleton, lungs, eyes, heart, blood vessels. e fan Foundation works to save lives and improve e quality of life for people wi fan, VEDS, Loeys-Dietz, and o er genetic aortic conditions. We educate patients and families, medical professionals, and e general public. we provide support and . rough e following programs in research, patient support, and education, e fan Foundation creates a brighter future for everyone affected by fan syndrome and related disorders: e fan Foundation's Research Program was launched in 1989 wi a $3,000 research grant ad. In , we aded grants totaling $700,000 to support. At is fan meeting, Ashley discovered some ing else. She was eligible to take part in a critical research study on losartan and how it compared to beta-blockers. Over e course of e multi-year study, e hope was at scientists would discover which drug was more effective for slowing e enlargement of e aorta in fan syndrome. e fan Foundation, Inc. (e Foundation), based in Port Washington, New York, was incorporated in 1981 in yland. It is e only national not-for-profit heal organization at supports people wi fan syndrome (a genetic disorder of connective tissue) and related disorders. e fan Foundation creates a brighter future for everyone aﬀected by fan syndrome and related disorders. • We pursue e most in ative research and make sure at it receives proper funding. • We create an informed public and educated patient community to increase early diagnosis and ensure life-saving treatment. e fan Foundation is a 501(c)(3) nonprofit organization creates a brighter future for everyone affected by fan syndrome, Loeys Dietz syndrome, vascular Ehlers Danlos syndrome, and o er genetic aortic conditions. It works tirelessly to advance research, serve as a resource for families and heal care providers, and raise public aeness. e fan Foundation, Inc. (e Foundation), based in Port Washington, New York, was incorporated in 1981 in yland. It is e only national not-for-profit heal organization at supports people wi fan syndrome (a genetic disorder ofconnective tissue) and o er related conditions. Kouchoukos and Dougenis have recommended at patients wi fan's syndrome undergo elective replacement of e ascending aorta when e diameter of e aorta exceeds 5.0 to 5.5 cm. 11 Similarly. DONATE TO A GOOD CAUSE Help save someone eyesight by donating generously, because eir eyes are important.www. fan. foundation fan Vision Foundation Inc. is a public charity Status: 170 (b)(1)(a)(vi) your donations are exempt from federal income tax . e fan Syndrome and Aortopa y Clinic at Washington University School of Medicine and Barnes-Jewish Hospital has hosted e Annual Meeting of e National fan Foundation on two occasions and is actively involved in research involving heritable oracic aortic diseases and is part of multiple clinical registries. e Canadian fan Association, was founded in 1986 by Elizabe McHenry and fan patients and physicians. Its purpose is to: increase public aeness of fan Syndrome and related cardiovascular and connective tissue disorders. provide accurate, timely information about e condition to affected patients, eir families and heal care personnel. encourage e establishments of fan. In partnership wi e Foundation, e Pediatric Heart Network recruited participants rough conferences, patient advocacy meetings, newsletters, and social media. e Foundation also helped raise funds to support trial costs. Wi support from NHLBI, e trial quickly met enrollment goals and was completed in . NORD’s regional membership meetings are designed to help you meet, network, learn and share best practices wi leaders of o er patient organizations in your geographic area. ey provide capacity building training and community updates, encourage knowledge sharing, and foster collaboration at can continue roughout e year. e fan Foundation’s nationwide walk program at brings e fan syndrome and related conditions community toge er. ANNUAL CONFERENCE held in association wi Stanford heal Care and Kaiser Permanente 525 participants supported by 200+ community leaders $640,000 raised for programs and services at reached 175,000 patients, families. e diagnosis of fan syndrome (MFS) relies on defined clinical criteria (Ghent nosology), outlined by international expert opinion to facilitate accurate recognition of is genetic aneurysm syndrome and to improve patient management and counselling. ese Ghent criteria, comprising a set of major and minor manifestations in different body systems, have proven to work well since wi. e fan Foundation 34 Annual Conference Heal Fair is being held on y 12–15, in Santa Clara, CA. e purpose of e Heal Fair is to educate individuals about e risks of fan syndrome and related disorders and encourage screening for ese conditions. is Heal Fair is entirely voluntary and anyone participate. , · VEDS patients are prone to artery ruptures anywhere in e body, including e aorta, rupture of hollow organs like e intestines and uterus, and lung collapse. 02, · Patients wi fan’s syndrome were randomized to receive ei er losartan or placebo. Losartan was started at 50 mg daily and en up-titrated to 0 mg daily after 2 weeks if well-tolerated (achieved in 54 of patients). Concomitant Medications: Beta-blockers (73). Hitachi Heal care Americas Sponsors e fan Foundation’s 35 Annual Conference. Twinsburg, OH y 29, - Hitachi Heal care was excited to sponsor e fan Foundation’s 35 Annual Conference at was held in Houston, TX, on y 11-14, . is conference provided people living wi fan syndrome. Apr 11, · e MMP-3 gene showed significant up-regulation in dissection patients wi fan syndrome in comparison wi control patients (Ln2 α = 2.22, p = 0.046). ere was no change in e MMP-3 gene expression level of e annuloaortic ectasia group when compared to e control group (Ln2 α = 0.31, p = 0.089) (Figure 2). Most patients are evaluated for fan syndrome because of eir skeletal manifestations. A person wi e disorder will usually be tall,, and loose jointed. Frequent signs of e disease include long, slender fingers and toes (arachnodactyly) and flat arches (pes planus). For patients wi fan syndrome, e aorta can become damaged and weakened, causing it to become wider (aneurysm) or torn (dissection). Connective tissue provides support to many structures wi in e body, such as e heart valves, blood vessels (e aorta), eyes, bones, nervous system and lungs. Because of is, patients wi connective. 18, · e findings indicate a second treatment option for fan patients, who are at high risk of sudden dea from tears in e aorta. e results are being presented . 18 at e American Heart Association’s annual meeting in Chicago and will appear online e same day in e New England Journal of Medicine. 08, · Pyeritz RE. fan syndrome: 30 years of research equals 30 years of additional life expectancy. Heart. 2009 . 95(3):173-5.. Yetman AT, Bornemeier RA, McCrindle BW. Usefulness of enalapril versus propranolol or atenolol for prevention of aortic dilation in patients wi e fan syndrome. Am J Cardiol. 2005 . 95(9):1125-7. 15, · e fan Foundation announced today e launch of fan DX, a mobile phone application to aid heal care professionals in e diagnosis of fan syndrome and related disorders. ese conditions are comprised of various features in multiple body systems at, toge er, can add up to a diagnosis at has potentially fatal complications. 01, 2002 · Background context: fan syndrome is a connective tissue disorder at results from a defect in e production of fibrillin. ese patients tend to have several osseous anomalies of e lumbosacral spine. Purpose: is study examines e effectiveness of plain radiographic findings in predicting fan syndrome. fan syndrome is a genetic disorder at affects e body's connective tissue. fan syndrome is a serious condition and can be life- reatening. e fan Foundation is committed to providing advocacy, resources and answers for heal care professionals, researchers, and patients . Feb 27, · fan syndrome is a disorder at affects connective tissue. Connective tissues are proteins at support skin, bones, blood vessels, and o er organs. One of ese proteins is fibrillin. A problem wi e fibrillin gene causes fan syndrome. fan syndrome can be mild to severe, and e symptoms can vary. e VEDS Movement is a division of e fan Foundation dedicated to improving e lives of ose affected by VEDS. Your contribution will allow us to pursue e most in ative research to improve e lives of our VEDS community. inform e public and educate e patient community to increase early diagnosis and ensure life-saving care. and provide essential support to families, caregivers. NIH/National Heart, Lung, and Blood Institute, US Food and Drug Administration, fan Foundation, Merck & Co. Inc., Teva Canada Ltd. Meeting American Heart Association's Scientific Sessions . e National fan Foundation (NMF) has released two brochures regarding fan syndrome. irty-seven evening CME courses will be available at is year's meeting. Also of interest are e. Patients, Families and Friends expand submenu for Patients, Families and Friends. How to Find a Disease Specialist. Tips for e Undiagnosed. e fan Foundation. e fan Foundation. e fan Foundation. 22 Manhasset Avenue Port Washington, NY 1 50 Toll-free: 1-800-8- FAN . 18, · For every qualified sale of fan aeness medical IDs, American Medical ID gives back of e proceeds to help fund e fan Foundation’s programs and patient services. In addition, e company also launched an informative online resource specifically for people living wi fan syndrome. Our Mission. Our mission is to save lives and improve e quality of life of individuals wi Vascular Ehlers-Danlos Syndrome (VEDS). By pursuing e most in ative research, educating e medical community, general public and affected individuals, and providing support to patients, families, and caregivers, we can charge ford and improve e outcomes for ose living wi VEDS. 06, · Foundation Unveils Upcoming Programming e fan Foundation continues to lead e way in reimagining its programs and services for e upcoming mon s, and perhaps well into 2021. As you know, we are in unprecedented times and have had to pause events, programs, and services at are conducted in-person.