News

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….

Read More

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…

Read More

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…

Read More

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…

Read More

Two Back Packs

For years I carried two backpacks. One with my volleyball gear, and one with my supplies for school. Although the fashion statement was questionable, I wore them with pride because I believed it spoke to who I was, an athlete, a student, a hard worker, and the girl who could do it all. For years I carried two backpacks,…

Read More

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…

Read More

Aytu BioPharma Announces AR101 Granted Orphan Designation in Europe for the Treatment of Ehlers-Danlos Syndrome

Aytu BioPharma, Inc., a pharmaceutical company focused on developing and commercializing novel therapeutics, announced on March 2, 2022 that the European Commission granted orphan designation to AR101 (enzastaurin), a PKCβ inhibitor, for the treatment of Ehlers-Danlos Syndrome (EDS), a group of rare inherited connective tissue disorders that includes the severe subtype vascular EDS (VEDS). This designation is based on…

Read More

The VEDS Movement Secures Support from the Daskal Family Foundation to Fund Emergency Department Awareness

The VEDS Movement is thrilled to announce the receipt of a major donation from the Daskal Family Foundation, led by Dr. Ierachmiel Daskal, to further its work to impact awareness of Vascular Ehlers-Danlos Syndrome (VEDS) in hospital emergency departments. We are grateful to Dr. Daskal for his dedication to improving awareness of VEDS among medical providers and saving lives…

Read More

Aytu BioPharma Announces FDA Clearance of Investigational New Drug (IND) Application for AR101/Enzastaurin in Vascular Ehlers-Danlos Syndrome

Pivotal clinical trial will begin in first half of 2022 Aytu BioPharma, Inc. (Nasdaq: AYTU), a pharmaceutical company focused on commercializing novel therapeutics and consumer healthcare products, announced on December 13, 2021, that the U.S. Food and Drug Administration (FDA) has cleared the IND application for AR101/enzastaurin, enabling the company to proceed with initiating a pivotal clinical trial for…

Read More

Las inscripciones están abiertas para la Cumbre sobre el Síndrome de Marfan y Condiciones Afines

Ya están abiertas las inscripciones para la Cumbre de la Fundación Marfan: Información educativa sobre Marfan, Loeys-Dietz, VEDS y condiciones relacionadas para pacientes y familias. Esta conferencia será virtual, completamente en español y se llevará a cabo el 22 de enero de 2022, de 08:30 – 17:00 hora del este E.U. Se realizará de manera virtual para que pueda…

Read More