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.
|USA||Pfizer||Katherine Beaverson (Chair)||Patient Advocacy Director, Rare Disease Research Unit|
|France||InnoSkel||Samantha Parker (Vice Chair)||Chief Patient Access Officer|
|USA||Sanofi Genzyme||Alaa Hamed||Global Head Sanofi Genzyme Rare Disease Medical Affairs, Sanofi Genzyme|
|USA||Recursion Pharmaceuticals, Inc||Chris Gibson||CEO & Co-Founder|
|UK||Congenica||Christina Waters||SVP, Global Genomic Insights and Solutions, Congenica, UK|
|Italy||Chiesi Farmaceutici||Diego Ardigò||Head of R&D, Global Rare Diseases, Chiesi Farmaceutici S.p.A., Italy|
|USA||Takeda Pharmaceuticals||Madhu Natarajan||Head, Rare Diseases DDU Research, Takeda Pharmaceuticals|
|Switzerland||Roche||Waiting for the nomination of the new representative||Head of Rare Disease Discovery|
|China||BGI||Ning Li||CEO, BGI Europe|
|France||Lysogene||Ralph Laufer||Chief Scientific Officer|
|USA||Cydan||ShiYin Foo||Chief Medical Officer|
|Switzerland||Ultragenyx||Tom Pulles||Head of Medical Affairs & Patient Advocacy|
|USA||Illumina Inc.||Volker Liebenberg||Director Medical Affairs EMEA, Illumina Inc.|