June 27, 2014
The Patient-Centered Outcomes Research Institute (PCORI), authorized by the US Congress to conduct research to provide information about the best available evidence to help patients and their health care providers make more informed decisions, has approved 13 people as members of PCORI’s new Advisory Panel on Rare Disease. The diverse group of panelists will apply their experience and expertise to advising PCORI on its research priorities in the area of rare disease, as well as on engaging with the rare disease research community. The new panelists represent a range of stakeholder groups and perspectives, including people with rare diseases, family caregivers, clinicians, drug and device makers, and researchers, among others with more than a third representing patients and patient advocates. The panel will assist PCORI in identifying experts to serve on ad hoc advisory panels as needed to consider research issues related to particular rare diseases to advice the US Congress.