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
Neta Zach
Head of Neuromuscular Disease Area Unit
Ning Li
Director
Nina Gonzaludo
Global Lead, Human Genomics Segment
Estelle Michael
Policy and Public Affairs Lead
Representative to be confirmed
Denis Keohane
VP Global Global Medical Affairs in Rare Disease
Marta Valente
Vice President Head of Medical Affairs Europe
Diego Ardigò
Head of R&D, Global Rare Diseases
Jeanene Fogli
Head of Patient Advocacy and External Collaboration
Magda Chlebus
Executive Director Science Policy and Regulatory Affairs
Waiting for the nomination of the new representative
Shirlene Badger
Global Patient Advocacy Lead
Vinciane Pirard (Chair)
Lead Scientific Advocacy and Insights – Global Medical Affairs Rare Diseases
Related Links
- The different contributions of the industry in public-private partnerships in Rare Diseases Research continuum
- Executive Summary PPP
- PPP Infographic Summary
- Data Sources and Registries Task Force
- Toward clarifications, improvement and international convergence in regulatory approvals of rare disease therapies with a focus on Advanced Therapy Medicinal Products