Identification of barriers to patient participation in RD research and recommendations to remove them


There is a need to determine how best to empower and enable patient participation in RD research. Therefore, the Patient Advocacy Constituent Committee (PACC) wants to take advantage of the players within IRDiRC who represent a broad swath of stakeholders within RD research and are already committed to the IRDiRC mission and effort, as well as further geographical representation.


Leverage IRDiRC’s stakeholder and geographic representation to conduct a complementary environmental scan of barriers to and recommendations for patient participation in RD research. To accomplish this, recommendations will be developed to (1) determine alignment of current efforts with needs, (2) facilitate better patient engagement across geographic areas with shared resources, (3) determine strategic areas for new funding initiatives, and (4) inform future activities of IRDiRC.

Task Force Members
The Task Force members include:

  • Anna Ambrosini – Fondazione Telethon, Italy
  • Katherine Beaverson – Pfizer, USA
  • Vanessa Boulanger – National Organization for Rare Disorders, NORD, USA
  • Virginie Bros-Facer – EURORDIS-Rare Diseases Europe, France
  • Rebecca Dimond – Cardiff University, United Kingdom
  • Ritu Jain – Rare Diseases International, RDI, Singapore
  • Prasanna Kumar Shirol, Organization for Rare Diseases India, ORDI
  • Pauline McCormack – Newcastle University, United Kingdom
  • Yukiko Nishimura – Advocacy Service for Rare and Intractable Diseases’ stakeholders, ASrid, Japan (Vice Chair of the Patient Advocacy Constituent Committee)
  • Gloria Pino-Ramirez – Latin American Alliance for Rare Diseases, Aliber, Spain
  • Antoine Regnault – AFM-Téléthon, France
  • Durhane Wong Rieger – Canadian Organization for Rare Disorders, CORD (Chair of the Patient Advocacy Constituent Committee)
  • Rachel Yang – Chinese Organization for Rare Disorders, CORD


Plans and timeline

  • September 2018: Initiation Task Force
  • October 2018: First teleconference of the Task Force
  • January – June 2019: Execution phase I Task Force
  • June – December 2019: Planning phase II Task Force
  • January – March 2020: Execution phase II Task Force
  • June 2020: Recommendations

Comments and suggestions
To submit your comments and suggestions on this Task Force, please contact us by completing this form.