The Chair of the Consortium Assembly, Dr Lucia Monaco, has been recently interviewed by Raconteur for its Rare Diseases Report published by The Times – The Sunday Times- on its July edition. Dr Monaco interview was one of the nine articles chosen for this focus and she well highlighted the relevance of “the fight for equal access to rare disease treatment” for all rare diseases patients, especially for those living in developing countries or rural regions.
Task Force Opening: Clinical Research Networks for Rare Diseases
The Interdisciplinary Scientific Committee (ISC) is establishing a Task Force on Clinical Research Networks for Rare Diseases aiming to map and analyse the existing ecosystem of national/supranational clinical research networks, and develop policy recommendations on guiding principles for an international framework of collaboration of these networks.
The ISC is looking for members to populate this Task Force with the below expertise in one or more of the following areas:
- Clinical research network coordination
- CRN clinical/research practice
- Clinical data sharing and reuse for research
- Establishment of good clinical practices
- International rare disease policy and regulatory issues
- Patient advocates
- Research funders
The usual time commitment includes quarterly 1-hour teleconferences, one face-to-face workshop (1-2 days), and regular email correspondence.
If you are interested in taking part in this activity, please send a CV, biosketch and letter of motivation (one paragraph each) to the Scientific Secretariat before May 20, 2019.
Importantly, do not forget to add in the subject of your email the reference of the project (Ref: TF-ISC-CRN).
Only selected candidates will be contacted. Other applications will be kept for potential future use.
Durhane Wong Rieger elected as Chair of the Patient Advocacy Constituent Committee
We are pleased to announce the election of Dr Durhane Wong Rieger, President & CEO of the Canadian Organization for Rare Disorders (CORD), as the Chair of the Patient Advocacy Constituent Committee (PACC).
Durhane Wong Rieger, PhD, is the President & CEO of the Canadian Organization for Rare Disorders (CORD). She is also the President & CEO of the Institute for Optimizing Health Outcomes (Canada), Chair of the Consumer Advocare Network and Chair of Canadian Heart Patient Alliance.
Additionally, Dr Durhane is involved in many international projects on rare diseases. She serves as Chair of the Council for Rare Disease International, member of the Steering Committee of the UN NGO Committee for Rare Diseases, Board member of Asia Pacific Rare Disease International, member of the Editorial Board of The Patient- Patient Centred Outcomes Research, member of the Global Commission to End the Diagnosis Odyssey for Rare Diseases and member of Health Technology Assessment International Patient /Citizen Involvement Interest Group.
She takes over the Chair position from Sharon Terry, President and CEO of Genetic Alliance, who continues as member of IRDiRC’s Patient Advocacy Constituent Committee.
Task Force Openning
The Diagnostic Scientific Committee (DSC) is establishing a Task Force on to address barriers to the diagnosis of rare diseases for Indigenous peoples, so as to help address critical areas that will need to be served if IRDiRC Goal 1 is to be met. The Indigenous Population Task Force will bring together the community addressing this challenge to identify priority areas and share best practices regarding current and future approaches in need of development to support improved, more equitable and culturally secure rare diseases diagnosis for Indigenous populations. This includes, but is not limited to those living in rural and remote areas.
Therefore, the DSC is specifically looking for members to populate this Task Force. Please see here for the full description of the experts profiles and the application procedure.
New leadership: IRDiRC’s stride forward
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.
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