The International Rare Diseases Research Consortium (IRDiRC) is pleased to announce the election of Dr Lucia Monaco, Head of the Research Impact and Strategic Analysis at Fondazione Telethon in Italy, as the next Chair of the IRDiRC Consortium Assembly. Dr Monaco will follow the footsteps of Dr Christopher Austin, Director of the National Center for Advancing Translational Sciences (NCATS), USA. Dr Monaco’s term will run from January 1, 2019 until December 31, 2021.
In their words
Dr Austin looks back on his tenure and IRDiRC’s progress
“IRDiRC is a truly international consortium – collaborators from around the world joined together by a common commitment to advance rare diseases research on a global scale. It has been an enormous and special privilege for me to chair the organization for the last three years. Together, we have made great strides, and I am confident that progress will further accelerate in the years to come.
When I became Chair in 2016, IRDiRC had grown so much that our governance and operations needed to be revised, to include a new Consortium Assembly, an Operating Committee, and three Constituent Committees which complemented the existing Scientific Committees and has made IRDiRC a more fully participatory organization. That same year, it became clear that IRDiRC’s initial goals would be achieved three years early, giving us the remarkable opportunity to decide on new IRDiRC goals. We embarked on an extensive and highly collaborative year-long process, in which virtually every IRDiRC member and country participated, resulting in publication of our new vision and goals in 2017 for the next decade. Those ambitious goals have captured the imagination and commitment of rare disease organizations all over the world, and galvanized action at an unprecedented scale. At the 3rd IRDiRC Conference held in Paris, France, we took stock of the progress IRDiRC had made since its founding in 2011, and engaged in deep deliberations over what were to become the 2017-2027 vision and goals. In late 2017 through early 2018, we engaged in another large collaborative process to determine activities that would be undertaken by IRDiRC to advance the goals we had enunciated, with metrics to measure progress. The activities decided upon were combined into a strategic roadmap for all IRDiRC activities for the upcoming years to ensure that our actions aligned with our vision and goals, and multiple new Task Forces were started to advance those activities. We did all this together while increasing our membership, continuing our ongoing projects, and meeting face-to-face twice a year and much more often virtually.
I want to thank you all for your partnership, hard work, and support during these crucial and packed three years – your efforts made it all possible! Collectively, we have been able to move IRDiRC in an incredibly productive direction, with many continuing and upcoming activities planned, and governance and procedures in place to sustain the momentum. At our meeting in Brussels, just completed, I was excited, if wistful, to hand over the reins of IRDiRC to our new Chair Lucia Monaco, along with our new Vice Chair David Pearce, and the new EJP RD-led Scientific Secretariat, all of whom will be starting officially on January 1, 2019.
Thank you for the opportunity to work with all of you for the benefit of science, medicine, and the 350 million people worldwide living with rare diseases. Let us not relent until our common vision is realized.”
Dr Monaco lays out her vision and IRDiRC’s future
“Last year, the IRDiRC Consortium Assembly formulated an inspirational vision, which tackles the need of people living with a rare disease to have access to therapies and diagnoses in the shortest possible time. I feel deeply motivated by the urgency conveyed by this vision.
IRDiRC has considerably grown and is now structured in a functional governance model. We have worked together at setting new challenging goals for 2027; a thorough roadmap and specific actions have been devised and are being pursued through the Constituent and Scientific Committees and dedicated Task Forces. We now need to proceed at full speed along this ambitious road. In my view, we need to work along three guiding principles: reach out, influence, and act together.
I am driven by a spirit of service to the rare disease community. My experience and duties in a charity devoted to rare diseases research, my acquaintance with the academic research community and biotech/pharma companies for the development of innovative therapies, and my experience in international projects working in partnership with patient organizations will help me in this challenging endeavor. I know I can count on the invaluable contribution and expertise of all women and men engaged in IRDiRC.”
Additional leadership changes
In addition to the handover of IRDiRC chairmanship, a new Vice Chair was also elected. Dr David Pearce, Executive Vice President of Innovation and Research of Sanford Health will replace Prof Hugh Dawkins, formerly Director of the Office of Population Health Genomics of Western Australia Department of Health and recently-appointed Chief Health Advisor of HBF Health Limited. Dr Pearce will work hand-in-hand with Dr Monaco to advance IRDiRC’s vision and goals, and assist her through his experience in bringing teams together and working with multi-stakeholders in all aspects of rare diseases research.
The coordination role of the IRDiRC Scientific Secretariat will also change hands, from Dr Ana Rath to Dr Daria Julkowska, under the framework of the European Joint Programme on Rare Diseases (EJP-RD). The new Scientific Secretariat will continue to support IRDiRC in its implementation of prioritized activities as determined by the IRDiRC Consortium Assembly, and ensure smooth running of the Committees and Task Forces to carry out their activities.