David Cameron joins Oxford research mission to develop treatments for rare diseases

Former PM's son, Ivan, died of a rare disease 15 years ago when he was six years old

David Cameron with his son Ivan in 2004. Shutterstock

David Cameron, Britain's former prime minister and foreign secretary, will help spearhead an Oxford research centre dedicated to developing new treatments for rare genetic diseases, inspired by the death of his son 15 years ago.

Ivan, who died aged six, suffered from Ohtahara syndrome, a rare form of epilepsy characterised by seizures.

Lord Cameron said he intends to use his role as chairman of an advisory council at the Oxford-Harrington Rare Disease Centre to help bring together "distinguished experts" to "develop 40 new treatments for rare diseases in the next decade".

"As a father I know all too well the impact of rare diseases," he said. "We miss our 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."

Speaking to BBC Radio 4 on Tuesday, Lord Cameron spoke about the shock the couple had experienced, realising your child is “never going to be able to walk or talk, or take part in so much of life”.

"But I think the other thing is what doctors call the diagnostic odyssey, which is when Ivan was born over 20 years ago, you had test after test – blood test, spinal fluid tests, brain scans, observing everything that happened – and still, all you ended up with was a description of some very bad symptoms but no real understanding of any underlying causes,” he said.

“And so what drives me on this is to think, it would be so great, that even if what you get is a proper description of what is wrong, that is so much better than so much time spent in these painful situations trying to find out more.”

Because 80 per cent of rare diseases are genetic, sequencing of genomes to try to get to the bottom of these diseases, which the new centre will do, means that it might also offer the hope of new treatment or potentially even cures, he added.

David Cameron aims to assemble 'distinguished experts' to 'develop 40 new treatments for rare diseases in the next decade'. PA

Lord Cameron said huge advances have been made in the diagnosis of rare diseases since his son’s death. Listening to leading geneticists at a recent seminar at the University of Oxford, he said he had “the real sense” if Ivan was born today and “all the right things happened”, including observing his genome and medical data, his life could have been different.

“I think that is really exciting," he said on Tuesday. "I sat here thinking, 'oh my God, if this happened today, he could have had a completely different and much longer life.'”

The centre is a partnership between the University of Oxford and the Harrington Discovery Institute in Cleveland, Ohio.

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

He called establishing Genomics England, the company set up to deliver the project, one of his "proudest moments as PM" and said of all the causes he has advocated: "This one really is personal."

The UK is already home to Zayed Centre for Research – which opened five years ago – to treat the world’s rarest diseases in children, from babies born without functioning immune systems to liver and metabolic disorders. It was built partly with a £60 million ($78.5 million) donation from the UAE'S Sheikha Fatima bint Mubarak, Mother of the Nation, and is a partnership between Great Ormond Street Hospital and its children's charity, and University College London.

It was awarded a licence to manufacture drugs by the Medicines and Healthcare Products Regulatory Authority (MHRA) in February. In vivo treatments are currently being used for liver, brain and neuromuscular disorders as well as some metabolic conditions.