VEDS Emergency Awareness Project Update

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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Research Topics are the Focus of 2022-2023 Webinar Series

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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Aytu BioPharma Receives Funding for Initiation of the PREVEnt Trial in Vascular Ehlers-Danlos Syndrome (VEDS)

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 Announces Initiation of the AR101 PREVEnt Trial for the Treatment of Vascular Ehlers-Danlos Syndrome

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 Announces Initiation of its Pivotal Phase 3 DiSCOVER Trial of EDSIVO™ (celiprolol) for the Treatment of Vascular Ehlers-Danlos Syndrome

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 Meeting, What’s New in Genetic Aortic and Vascular Conditions, Set for August 28, 2022, in Paris

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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Free Medical IDs Now Available Through The VEDS Movement

Free Medical IDs Now Available with pictures of medical IDs

We are pleased to announce free Medical IDs are now available to people with Vascular Ehlers-Danlos Syndrome (VEDS) through The VEDS Movement, thanks to the generous donation from the Daskal Family Foundation for the VEDS Emergency Awareness Project. Through a partnership with Sticky J, a medical ID bracelet company, bracelets are now available to people affected by VEDS in…

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Aytu BioPharma PREVEnt Trial Upate

The specialty pharmaceutical company, Aytu BioPharma, announced this week that it anticipates the PREVEnt trial will 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 writes the following:  “Aytu BioPharma remains committed to the conduct of the PREVEnt Clinical Trial testing AR101 (enzastaurin) in VEDS. Through our global Contract…

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Registration is Now Open for E3 Conference

Registration is Open for The Marfan Foundation’s E3 Conference, held in Association with Hoag Memorial Hospital Presbyterian, in Newport Beach, CA, July 7-10, 2022 The Marfan Foundation, in association with Hoag Memorial Hospital Presbyterian, will hold its E3 Conference: Educating, Empowering, and Enriching Our Community, in Newport Beach, CA, July 7-10, bringing together more than 600 individuals and families…

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New Date! Second International Patient Meeting, What’s New in Genetic Aortic and Vascular Conditions, is Set for August 28, 2022, in Paris

The Marfan Foundation, which has a long history of bringing together the international research community, announced the new date for its second international patient symposium on genetic aortic and vascular conditions. The one-day symposium is now scheduled for Sunday, August 28, 2022, at Le Méridien Etoile in Paris, France. The focus of the meeting is What’s New in Genetic…

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