We started our ambassador program because of an overwhelming desire from patients and caregivers to get more involved in RDMD’s work and research. Patients were excited about RDMD’s product and mission, and felt eager to help in other ways, including by sharing information and answering questions about RDMD within their own communities.
The RDMD ambassador program started in January 2019, and it’s already expanded across six rare diseases: MMA, Sanfilippo, IBM, CIDP, NF1, and NF2. Ambassadors have monthly calls with RDMD, to discuss the latest news about research, clinical trials, and therapies relating to their disease. They also share progress about their own conditions, ask questions, check in about recruitment progress, and relay feedback from their communities. Via their existing networks—whether Facebook, support groups, or texting or calling people directly—ambassadors then share what they’ve learned and answer questions about RDMD.
So who are these ambassadors? They’re already leading voices in their disease communities—either as patients or as caregivers for patients—and are active members of support groups, advocacy organizations, registries, Facebook groups, and other patient organizations. They’re driven, outspoken, optimistic, and involved. They’re parents, students, and professionals, and they hail from all over the US. RDMD is grateful to work with such dedicated leaders and advocates, and excited for the ambassador program to continue growing.
“This is what we need. We have to trust each other and get the job done.”
One patient has one voice and one set of data. One patient ambassador can inspire dozens more patients, who can then raise their own voices. A chorus of voices means an outpouring of data. And a robust dataset is more effective: With increased access to patient data, researchers can better understand a condition, attract more interest from drug developers, and design better clinical trials. As one patient said at last week’s kickoff meeting for the program, “This is what we need. We have to trust each other and get the job done.”
Find out more, or sign up to become a patient ambassador, at firstname.lastname@example.org.