Finding Common Ground at DysConf 2025

Chris and I were fortunate enough to attend DysConf 2025 in our hometown of Raleigh over the weekend. Hosted by Dysautonomia International, this year’s event, themed “Common Ground,” brought together patients, clinicians, researchers, and advocates from across the dysautonomia spectrum: POTS, Ehlers‑Danlos syndrome, mast cell activation, long COVID, and more. The environment was both intellectually stimulating and emotionally resonant, offering not only cutting-edge science (Nuropod, Regeneron, Lumia) but also space for connection and solidarity.

What stood out most was the balance between rigor and compassion. The sessions covered vital topics like cerebral blood flow regulation, immune dysfunction in POTS, pediatric diagnostics, and rehabilitation strategies. Speakers such as Dr. Amanda Miller and Dr. Blair Grubb challenged conventional thinking while remaining grounded in patient-centered care. The dedicated Rehab Intensive for clinicians was especially valuable, providing practical strategies for PTs and OTs that can translate directly into better outcomes.

Beyond the lectures and panels, what truly made DysConf special was the community itself. There were moments of vulnerability, strength, and support: teens finding peers, caregivers sharing experiences, patients advocating for research, and physicians connecting on how best to serve their patients. Events like support mixers, storytelling booths, and even karaoke underscored a sense of belonging that many in this community rarely experience. 

I’m profoundly grateful to the organizers, speakers, volunteers, and attendees who made this possible. DysConf 2025 didn’t just inform; it inspired.