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David Cameron Assumes Responsibility in Developing Treatments for Rare Genetic Diseases


With over 400 million people worldwide affected by rare diseases, approximately half of these cases involve children.

Former Prime Minister Lord David Cameron has announced his leadership of the advisory council for a body focused on developing treatments for rare genetic diseases

Cameron, who tragically lost his son Ivan to a rare disease over two decades ago, expressed that this cause is deeply personal to him.

The Oxford-Harrington Rare Disease Centre (OHC) has warmly welcomed Cameron as the chair of its advisory council.

This partnership between the University of Oxford and the Harrington Discovery Institute in Ohio aims to bring cutting-edge breakthroughs in rare disease treatment.

Under Cameron’s guidance, experts are working towards introducing 40 potentially life-changing therapies for rare diseases into clinical trials within the next decade.

There are currently more than 400 million people globally affected by rare diseases, with children accounting for about 50% of cases. New rare diseases are continuously being discovered on a daily basis.

Approximately 30 million people in Europe and 10% of the U.S. population live with rare diseases. These conditions are mostly genetic and remain with the individual throughout life.

Matthew Wood, the Director and Chief Scientific Officer of the OHC, believes that Cameron’s leadership can make a significant impact on patients and their families.

Dr. Jonathan S. Stamler, President and Co-founder of the Harrington Discovery Institute, also expressed support for Cameron’s role, highlighting the need for high-level access to introduce new treatments.

Only 5% of rare diseases have treatments approved by the U.S. FDA, and a similar percentage applies to treatments approved by the European Medicine Agency, the OHC noted in a statement.

Eight out of 10 rare diseases have a genetic basis and are often severe and chronic, with an average diagnosis time of four years.

Cameron launched the 100,000 Genomes Project during his time as prime minister, aiming to enhance clinical diagnostics and genomic medicine adoption in the NHS.

Over 50,000 whole genomes were sequenced as part of the project within six years.

Reflecting on the project, Cameron acknowledged the establishment of a leading genome database as one of his proudest achievements.

Cameron shared his personal connection to the cause, as his son had Ohtahara syndrome, a rare form of epilepsy characterized by seizures and developmental delays.

Writing in The Times on Monday, Cameron emphasized the importance of various factors in delivering new treatments, including a flexible licensing regime and robust research institutions.

Cameron stressed the need for ambition in Britain to address these challenges.

Baroness Nicola Blackwood will join Cameron on the OHC advisory council, bringing her expertise as Chair of Genomics England and Oxford University Innovation, as well as being a board member of the biotechnology company BioNTech.



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