News

Researchers at the MGH Institute of Health Professions are asking you to consider participating in the online Mass General Brigham Institutional Review Board (IRB) approved research study: “Parental Decision-Making Process and Post-Test Communication Around Predictive Genetic Testing for Children for Vascular Ehlers Danlos Syndrome” Predictive genetic testing is genetic testing done for an individual who does not currently have symptoms…

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By The Marfan Foundation New guidelines for the diagnosis and management of aortic disease were published yesterday in the Journal of the American College of Cardiology and Circulation. These guidelines, which were created by a team of medical experts on behalf of the American College of Cardiology and American Heart Association, provide recommendations on the diagnosis, evaluation, medical therapy, endovascular and surgical intervention,…

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We are extremely disappointed to hear the news that Aytu is suspending all research and development, including the PREVEnt trial for VEDS. It is certainly a sign of the times with a recession looming, resulting in small biopharma halting critical, potentially life-saving research, for financial reasons.   While it is very painful that the trial has been halted, the…

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Earlier this year, we announced a major donation from the Daskal Family Foundation, led by Ierachmiel Daskal, MD, to fund the VEDS (Vascular Ehlers-Danlos Syndrome) Emergency Awareness Project and further our work to impact awareness of VEDS in emergency departments. Thanks to this funding, so far we have been able to:  provide educational outreach on VEDS and access to…

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This year, The Marfan Foundation’s webinar series is focusing on the latest research related to Marfan, Loeys-Dietz, and VEDS with leading experts giving the presentations in our regular webinar format. As always, it is free to participate in these webinars, though registration is required. The webinar schedule for the coming year currently includes the following. Please stay connected to…

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The specialty pharmaceutical company, Aytu BioPharma, announced an update today for the VEDS community on the PREVEnt trial for enzastaurin. The PREVEnt trial is expected to begin in late 2022 or early 2023. This study will be investigating the ability of enzastaurin to reduce the severe complications of VEDS. There are currently no FDA-approved therapies for VEDS.  Aytu BioPharma CEO Josh Disbrow shares the following:  “Dear Vascular Ehlers-Danlos Syndrome Community: Thank…

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Aytu BioPharma, a pharmaceutical company focused on developing and commercializing novel therapeutics, has announced the initiation of the global Phase 3 PREVEnt (Prevention of Ruptures with Enzastaurin for Vascular Ehlers-Danlos Syndrome) clinical trial of enzastaurin (AR101) for the treatment of patients with COL3A1-positive Vascular Ehlers-Danlos Syndrome (VEDS). The company has begun patient identification and study site contracting and has…

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Acer Therapeutics Inc. (Nasdaq: ACER), a clinical stage pharmaceutical company focused on the acquisition, development and commercialization of therapies for serious rare and life-threatening diseases with significant unmet medical needs, yesterday announced the initiation of patient screening in its Phase 3 DiSCOVER (Decentralized Study of Celiprolol on vEDS-related Event Reduction) clinical trial of EDSIVO™ (celiprolol) for the treatment of patients with COL3A1-positive vascular Ehlers-Danlos Syndrome…

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Registration is now open for the second international patient symposium on genetic aortic and vascular conditions, which is set for Sunday, August 28, 2022, at Le Méridien Etoile in Paris, France. Registration is free, but required. Please register here. Confirmed speakers include: Dr. Juan Bowen, Mayo Clinic, Dr. Alan Braverman, Washington University in St. Louis, Dr. Scott LeMaire, Baylor-St….

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The VEDS Movement offers free medical ID bracelets to individuals with confirmed Vascular Ehlers-Danlos syndrome (VEDS), made available through a generous donation from the Daskal Family Foundation.  Eligibility Requirements  To qualify for a free medical ID bracelet, applicants must submit:  Applicants unable to provide the required documentation confirming a VEDS diagnosis will unfortunately not qualify for a free VEDS…

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