Former prime minister Lord Cameron has announced he is taking up the role as chairman of the advisory council for a body aimed at developing new treatments for rare genetic diseases.

The Oxford-Harrington Rare Disease Centre is a partnership between the University of Oxford and the Harrington Discovery Institute in Cleveland, Ohio.

Writing in The Times, Lord Cameron said the cause is close to his heart, having lost his son Ivan to a rare genetic disease 15 years ago.

As prime minister, he launched the 100,000 Genomes Project in 2012, where the genomes of 100,000 NHS patients with a rare disease or cancer were sequenced.

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The former MP for Witney called establishing Genomics England, the company set up to deliver the 100,000 Genomes Project, one of his “proudest moments as PM”.

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.​​​​​​​"

Lord Cameron's son Ivan, who was born with Ohtahara syndrome, a rare genetic condition, died at the age of six in 2009 after suffering from a form of epilepsy characterised by seizures and developmental delays, which left him unable to talk and severely disabled. 

He added: “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.”​​​​​​​  

OHC Director and Chief Scientific Officer Professor Matthew Wood 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.

"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.”