As a global organization, our staff at Congenital Hyperinsulinism International (CHI) have opportunities to assist patients and doctors in faraway places. Every so often there is a nearby opportunity, allowing our staff to engage face-to-face within their home state. There is a special connection in getting to answer to the needs of the rare disease community in our local area. In late March, our Chief Research Officer Tai Pasquini, a Massachusetts resident and RDAC member since 2021, was given the unique opportunity to testify at a hearing at the Massachusetts State House as a member of the Rare Disease Advisory Council (RDAC).
Statewide RDACs bring together stakeholders of the rare disease community – patients, advocates, doctors, and pharmaceutical industry representatives– along with legislators to advise their state on the needs of the rare disease community. The program began in 2015 in North Carolina and has successfully spread to 26 states with the goal of advising every state in the US. In fact, the RDAC of New Jersey includes our CEO Julie Raskin as a member!
During the meeting, Tai and her fellow RDAC members presented the Rare Disease Prevalence Report in Massachusetts to the State Senate and House, explaining the report’s findings at a legislative briefing. The report, which you can read here, estimates that 200,000-700,000 individuals in Massachusetts live with a rare disease.
Additionally, RDAC members put together a survey and resources to communicate the support needed. This led to conversations about how to engage further in the future and to help Massachusetts lead in the ways that the state supports the rare disease community. RDAC members, including state representatives shared their stories and connections to rare diseases. In response, legislators asked questions to understand what they can do to support patients in their community and to help break down barriers to access.
To wrap up her time at the Statehouse, Tai met with a member of the Lieutenant Governor’s staff and received a tour of the building.
If you would like to learn more about Rare Disease Advisory Councils, please visit the RDAC site.
