2nd Scientific Meeting on VEDS May 2, 2018 Amsterdam, The Netherlands
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 earlier this year to help advance VEDS research and treatment. For one very full day, we had 40 people in the same room, talking exclusively about VEDS and how we can improve the quality of life and treatment for patients, as well as how we can advance research to bring about new treatments. 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 School of Medicine) and Xavier Jeunemaitre (University Paris Descartes, Hospital Pompidou).
DEFY’s chairman, Tony Yasick, kicked off the meeting with a very personal discussion of the impact VEDS has from a family perspective. This was followed by sessions discussing VEDS research, both in pre-clinical animal models and clinical trials in humans. There was also extensive discussion on how best to treat VEDS patients in order to improve quality of life and maximize long-term prognosis. What became clear was that there was significant knowledge in the room, but that it has not always been effectively shared between different doctors and hospitals. There also are some countries that have dedicated resources within their national health care systems to ensure that all VEDS patients receive standardized, best-in-class treatments. There are other countries, the US among them, where the care of VEDS patients varies significantly in different areas of the country.
At DEFY, we are embarking on a project to improve and standardized the care of all VEDS patients in the US. We will be sharing more on this as it develops, but we believe strongly that we need to do more to alert caregivers, particularly emergency room doctors, to a patient’s VEDS status and to ensure that caregiver has access to all the information he or she needs to provide patients the best standard of care.
The group gathered in Amsterdam was incredibly engaged and passionate about VEDS and helped set a clear path forward for follow-up. Going forward, action items will be organized into four main workstreams that will be led by the meeting's co-chairs:
Disease Awareness and Education
Scientific and Clinical Research
Patient Registries and Data Sets
Development of International Consensus for Management and Treatment
Thank you all for your support. Without you, we could not have had this meeting. There is still so much do to help VEDS patients, but we are confident that the fastest way to a cure is to ensure that the world’s leading minds are all working together in the same direction.