IRDiRC has long recognized the importance of the involvement of patient representatives in its program and activities. By the end of its inaugural year, in 2011, the Consortium was comprised of 18 public funding members in addition to three international umbrella patient groups. The first private funders (i.e., companies), joined the effort the following year. With the aim of encouraging a more global representation, in April 2017, IRDiRC updated its governance to empower patient advocate groups to apply for IRDiRC membership. Now, IRDiRC’s membership includes 13 different patient advocacy organizations from 11 countries.
Following an expansion phase in the past year, the Patient Advocates Constituent Committee (PACC) refined its mission, purview, and membership criteria, to meet the new goals of the Consortium.
IRDiRC welcomes membership applications from umbrella patient organizations that:
- Represent broad patients’ interests for all rare diseases in at least one country or larger area, and
- Contribute to research that shares and will advance the IRDiRC Vision and Goals (e.g., developing and providing tools to accelerate research, diagnostic and therapeutic development, evaluation of processes)
Additionally, IRDiRC recommends that the applying organization nominate a representative who has direct experience with a rare disease and worked in the interest of patients for at least a year.
IRDiRC is looking forward to welcome new patients organizations among its members. For more information and instruction on how to apply, please consult the “Become a Patient Organization Member” page.