Membership is open to anyone with a confirmed genetic test result showing a PRRT2 mutation — including asymptomatic carriers — or a family member signing up on their behalf. Tell us who you are so we can start connecting you with the resources, research, and community this diagnosis has never had.
Membership is open to anyone with a confirmed positive PRRT2 genetic test result — symptomatic or not — or a family member/caregiver signing up on their behalf. Your name is never shared publicly — only de-identified data — and everything you tell us stays private and internal to the PRRT2 Foundation.
PRRT2 is one of the rarest genes in medicine — and right now, no one has a complete picture of it. Your membership is how we build that picture. Everything you share is used internally by the Foundation to understand how PRRT2 truly behaves: who it affects, how it shows up, how it changes across a lifetime, and what actually helps.
That understanding is power. The more complete your profile, the stronger the case we can carry to researchers, clinicians, drug developers, and future partners — the case that PRRT2 is real, measurable, and deserving of targeted treatment. Data is what turns a rare diagnosis into a research priority.
Because this community is so small, every single person counts — and so does every answer. There are no throwaway questions here; each one you complete sharpens the science, helps open the door to new treatment studies, and brings us one step closer to a cure. We're on a mission to find and unite every PRRT2-positive patient in the world, and to forge the partnerships that make real progress possible.
As a member, you'll also be among the first to hear as new research studies, clinical trials, and partnerships open up. You're not just filling out a form — you're helping build the foundation of everything that comes next. Thank you for being part of it.