As Chair of the council, Lord Cameron will lead the international efforts in its philanthropic mission, build partnerships, expertise and networks, while also focusing on extending global awareness of the OHC and its objectives.
The Oxford-Harrington Rare Disease Centre is a partnership between the University of Oxford and Harrington Discovery Institute at University Hospitals in Cleveland, Ohio, aimed at delivering cutting-edge rare disease breakthroughs. Under Cameron's leadership, the OHC aims to deliver 40 new potentially life-changing therapies for rare diseases into clinical trials over the next ten years, while providing scalable solutions to address the rare disease challenge globally.
He said: “Of the causes I have advocated, this one really is very personal. Setting up Genomics England and establishing a world-leading database with hundreds of thousands of genomes is one of my proudest achievements as Prime Minister. Yet, to be truly transformational, genomics requires the best of academia, life sciences, pharmaceutical companies, philanthropy and venture capital from around the world to come together. That is what the Oxford-Harrington Rare Disease Centre sets out to do, convening those key players and uniting around a bold mission: to deliver 40 new treatments for rare diseases in the next decade.
“As a father I know all too well the impact of rare diseases. We miss our son Ivan every day – all these years on our loss is still so raw. But the steps we are taking now means that, in the not-too-distant future, families like ours will have hope. It is vital that we try to give it to them.”
Lord Cameron is a passionate advocate of rare disease research and development as a parent of a child born with a rare and incurable disease. His family’s experience, caring for their son Ivan who had a rare condition known as Ohtahara syndrome, made the issue of rare diseases deeply personal to him. While in Government, this personal connection inspired him to establish the 100,000 Genomes Project in 2012, working with leading scientists, healthcare advisors and agencies, including the UK National Health Service (NHS) and Medicines and Healthcare products Regulatory Agency (MHRA), all with the aim of accelerating progress to treat the millions of people affected by rare diseases.
Genomics England has since helped position the UK as a leader in rare disease research, fostering collaboration and supporting the development of ground-breaking treatments. Matthew Wood, Director and Chief Scientific Officer of the OHC, added: “The OHC is aiming to make a global impact on the treatment of rare diseases by advancing pioneering science and driving the development of breakthrough therapies. Our Advisory Council plays a pivotal role not only in guiding our actions but also in bringing together the rare disease community with leading decision-makers to raise awareness of and address the key challenges being faced. We are proud to welcome Lord Cameron back as Chair of the Advisory Council, as he brings the passion and commitment from real world experience alongside a global profile. We are confident that his leadership, alongside the other members of our Council, can enable the progress needed to make a meaningful difference to patients and their families.”
Jonathan S. Stamler, MD, President and co-Founder of Harrington Discovery Institute, said: “Rare diseases represent a global health issue that faces unique challenges. Individual disorders may affect very few patients, but collectively more than 400 million people worldwide are living with such a disease, about half of which are children. The OHC was created to make meaningful progress in changing the rare disease landscape for patients, their families and society. We will shortly announce the first class of Oxford-Harrington Scholars representing ground-breaking rare disease research programmes in the UK, US and Canada.”
Lord Cameron joins Professor Sir John Bell (President, Ellison Institute of Technology Oxford, and former Regius Professor of Medicine at Oxford University from 2002 to 2024), Baroness Nicola Blackwood (Chair of Genomics England and of Oxford University Innovation), John F. Crowley (President and CEO of the US Biotechnology Innovation Association), Ronald G. Harrington (a renowned entrepreneur and philanthropist, and co-Founder of the Harrington Discovery Institute), and Jonathan S. Stamler, MD (President and co-Founder of the Harrington Discovery Institute), on the OHC Advisory Council.