On October 7, as part of VEDS Action Month, several of The VEDS Movement’s Steering Committee members met with the FDA for a Patient Listening Session.
Patient listening sessions are small, informal, non-regulatory discussions with the FDA about experiences with diseases and disorders. The VEDS Movement reached out to the FDA to request this listening session on behalf of patients with VEDS, to facilitate a discussion with the FDA about individual experiences living with VEDS.
Sarah Jeffs, Jeremias Tays, Kristi Posival, Aaron Sander, Meg Boeglin, and Emma Borreggine, all members of our Steering Committee and leaders in the community, as well as Katie Wright, Director of The VEDS Movement, shared perspectives with the FDA. These community members shared their experiences living with VEDS, living through life-threatening emergencies, parenting children, losing friends and family, growing up with VEDS, dealing with barriers and challenges in medical care, experiences with care in an emergency setting, and thoughts about what a successful treatment would look like.
Our Chief Scientific Officer, Jo Grima, also briefly shared important information about the current state of research and treatment.
“For me,” said Aaron Sander, “the goal was to inform an important organization what the VEDS community needs, what the condition is from a clinical standpoint, how it affects us on a daily basis, and the struggles we go through. That way they not only know what it is like to live with VEDS, but how they can help us with finding a treatment. I think we really accomplished that today.”
Emma Borreggine said, “One of the hardest things for patients, especially rare disease patients, is building up the courage and energy to share details about our stories and medical histories, just to be faced with confused, indifferent, or even skeptical responses from people who do not take the time to really hear what we are saying. Having the opportunity to meet with the FDA and have a whole group of people whose only job was to listen – not to question, not to gather all the facts, not to try and come to conclusions – was such an important reminder of how empowering it is to not only share your story, but to feel truly heard in doing so. Additionally, what is exciting to me in looking back on the session, is the possibility that even one person from that meeting will stop the next time they hear Vascular Ehlers-Danlos Syndrome and say, ‘wait, I remember something about that’, or that when they hear about a family’s trying medical history, think ‘that sounds familiar, I wonder if it could be VEDS.’ Each tiny seed that we are able to plant is so important in our fight for education and awareness, and hopefully we were able to plant a few with the FDA!”
The VEDS Patient-Listening Session Meeting Summary can be found here.
The VEDS Movement looks forward to organizing more opportunities to elevate the voices in the community, raise awareness, and advocate for change. You can be part of VEDS Action Month by sharing your own story, completing the VEDS Action Month action items, and celebrating with us on October 23 at our first Birthday Bash.