Thanks to the generosity of many donors to the DEFY Foundation, together with an unrestricted educational grant from Acer Therapeutics, DEFY sponsored a groundbreaking meeting to help advance VEDS research and treatment. Participants included top researchers and caregivers from the US and Europe, as well as VEDS patients, family members, and advocates. The co-chairs of the meeting were Peter Byers, MD (University of Washington), Hal Dietz, MD (Johns Hopkins University School of Medicine) and Xavier Jeunemaitre (University Paris Descartes, Hospital Pompidou).
Sessions included discussing VEDS research, both in pre-clinical animal models and clinical trials, and how best to treat VEDS patients in order to improve quality of life and maximize long-term prognosis. These discussions helped to set a path forward for additional efforts focused on:
Disease Awareness and Education
Scientific and Clinical Research
Patient Registries and Data Sets
Development of International Consensus for Management and Treatment