IRDiRC announces change in leadership for its Funders Constituent Committee (FCC)

The International Rare Diseases Research Consortium (IRDiRC) announces new leadership changes in its Funders Constituent Committee (FCC). Dr. Adam Hartman (Program Director at the National Institute of Neurological Disorders and Stroke (NINDS), USA), FCC Chair, and Dr. Catherine Nguyen (Director at the Thematic Institute of Genetics, Genomics, and Bioinformatics, INSERM, France), FCC Vice Chair, have concluded their leadership mandates. IRDiRC gratefully acknowledges their exceptional leadership during their tenure.

In May 2023, an internal nomination call and election was conducted, resulting to the election of Dr. Christopher McMaster from the Canadian Institutes of Health Research (Canada) as FCC Chair, and Stefano Benvenuti from the Fondazione Telethon (Italy) as FCC Vice Chair.

About Dr. Christopher McMaster

Dr. Christopher McMaster, PhD, FCAHS, currently serves as the Scientific Director of the Institute of Genetics for the Canadian Institutes of Health Research (CIHR) and Professor of Pharmacology in the Faculty of Medicine at Dalhousie University, Canada. Previously, he was the Head of Pharmacology at Dalhousie University, and was Assistant Dean for Graduate and Post-doctoral Studies in the Faculty of Medicine at Dalhousie University. He has received numerous awards such as Canada Research Chair, Carnegie and Rockefeller Professorship, and Fellow of the Canadian Academy of Health Sciences. Having a strong involvement in national and global rare disease programs, and with an ongoing interest and participation in IRDiRC activities since 2014, Dr. Christopher McMaster expressed his major trust in IRDiRC’s mission as a community that “is eager to share knowledge and experience, and work collaboratively across borders in order to bring diagnoses and therapies to patients.”

About Stefano Benvenuti

Stefano Benvenuti currently serves as the Head of Public Affairs at Fondazione Telethon, Italy. He has been involved in several initiatives on research policy, both at national and international level. He is the representative of Fondazione Telethon in the International Consortium for Personalized Medicine (ICPerMed) where he co-chairs the ICPerMed Working Group on Health Economic Value of Personalized Medicine Approaches. He coordinated the drafting of the research section of the Italian Action Plan for Rare Diseases 2023-2025 and is now member of the Italian National Committee on Rare Diseases. Stefano joined IRDiRC in early 2022 as Fondazione Telethon’s representative in FCC and considers that the experience in IRDiRC has been inspiring and formative from the very start. He mentioned, “IRDiRC is the answer of the RD community to the complexity of the challenges we need to face. Thanks to the success of research on some rare diseases, I feel we are now all aware that we have the technology to develop treatments for most rare diseases. But none of us could make it alone.”

IRDiRC warmly congratulates its new FCC chairs and is looking forward to a successful collaboration in advancing rare diseases research.