Lord Cameron to chair advisory council of OHC

Former UK Prime Minister David Cameron has returned to the Advisory Council of the Oxford-Harrington Rare Disease Centre (OHC), where he will lead efforts to deliver 40 new potentially life-changing therapies for rare diseases into clinical trials over the next decade.

He originally joined in October last year before he was appointed Foreign Secretary, a role he held between November 2023 and July 2024.

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Lord Cameron is a passionate advocate of rare disease research though his family’s experience of caring for their son Ivan, who had a rare condition known as Ohtahara syndrome.

"Of the causes I have advocated, this one really is very personal," he said.

When in government, he established in 2012 the 100,000 Genomes Project, working with scientists and agencies, including the UK National Health Service (NHS) and Medicines and Healthcare products Regulatory Agency (MHRA).

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.

"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," he said.

"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."

Matthew Wood, director and chief scientific officer of the OHC, said: "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."

The OHC is a partnership between the University of Oxford, UK and the Harrington Discovery Institute at University Hospitals, Cleveland, Ohio.

More than 400m people worldwide are living with a rare disease, with around half of them children. The majority are genetic in origin, which means they are present throughout a person’s life.

Only five per cent of rare diseases have a treatment approved by the US Food and Drug Administration (FDA) and similar estimates have been made for treatments approved by the European Medicine Agency (EMA).