Sharon Terry, EspeRare’s President & CEO of Genetic Alliance, has been named a Commissioner of the newly launched Rare Diseases International (RDI)-Lancet Commission on Rare Diseases (RDI-LCRD). This prestigious initiative brings together experts from across six continents to advance evidence-informed policy recommendations aimed at improving the lives of Persons Living with a Rare Disease (PLWRD) worldwide.
Chaired by Dr. Roberto Giugliani (Brazil) and Dr. Kym Boycott (Canada), the RDI-LCRD will play a crucial role in shaping the future of rare disease policies globally. The launch of this Commission comes at a pivotal moment, coinciding with the World Health Organization (WHO) Executive Board meeting, where the upcoming World Health Assembly (WHA) Resolution on Rare Diseases will be discussed. This resolution, currently co-sponsored by 21 Member States, is expected to call on the WHO to develop a 10-year Global Action Plan on Rare Diseases, representing a significant step toward making rare diseases a global health priority.
EspeRare strongly supports this international momentum and recognizes the vital role of multi-stakeholder collaborations in addressing the unmet needs of the rare disease community. Sharon Terry’s leadership and deep commitment to patient advocacy will undoubtedly contribute to the Commission’s success in shaping policies that drive meaningful change for individuals and families affected by rare conditions.
For more details on the RDI-Lancet Commission, visit: Rare Diseases International-Lancet Commission website.
