The IRDiRC Companies Constituent Committee (CCC) brings together representatives from the for-profit pharmaceutical and biotech members of IRDiRC.
The CCC identifies common – often recurring and resource-consuming – roadblocks to efficient execution of rare disease research in the company space and promotes collaborations on “zero” or pre-competitive aspects of research as well as development.
Within these broad areas, a number of potential activities were identified by the CCC, including the need for a natural history and registry platform for the collection of real-world evidence data to support more efficient therapeutics development.
In order to work towards the IRDiRC therapies and access goals of 2027, the CCC will also investigate how to transform science to accelerate clinical development and translate innovation into sustainable access to medicines.
Rohita Sharma
Senior Director – Global Strategic Alliances, Patient Experience, Medical Affairs
Samantha Parker
Patient Advocacy and Communication Lead Rare Disease Europe
Estelle Michael
Policy and Public Affairs Lead
Ning Li
Director
Denis Keohane
VP Global Global Medical Affairs in Rare Disease
Marta Valente
Vice President Head of Medical Affairs Europe
Lewis Raynor
Director Epidemiology
Jeanene Fogli
Head of Patient Advocacy and External Collaboration
Diego Ardigò
Head of R&D, Global Rare Diseases
Waiting for the nomination of the new representative
Magda Chlebus
Executive Director Science Policy and Regulatory Affairs
Vinciane Pirard (Chair)
Lead Scientific Advocacy and Insights – Global Medical Affairs Rare Diseases
Adriana Huertas-Vazquez (Vice Chair)
Senior Director, Global Medical Affairs
Neta Zach
Head of Neuromuscular Disease Area Unit