The Baroness Blackwood of North Oxford
Oxford-Harrington Rare Disease Centre Advisory Council Member
United in Our Mission to Cure Rare Disease
The Baroness Blackwood of North Oxford
Oxford-Harrington Rare Disease Centre Advisory Council
Chair, Genomics England, and Oxford University Innovation
Life Peer, House of Lords, UK Parliament
Baroness Nicola Blackwood brings a unique perspective to the Oxford-Harrington Rare Disease Centre (OHC) Advisory Council. Having served as a Health Minister under two Prime Ministers, she sits at the intersect between science, policy, and innovation. And since 2020 she has been Chair of Genomics England, which in partnership with the NHS is seeking to end the diagnostic odyssey and discover new therapeutics for those with rare diseases.
“While each condition alone is rare, over 7,000 rare diseases affect nearly 400 million people globally at some time during their lives,” Baroness Blackwood says. “Children are disproportionately affected, and many die before their fifth birthday.”
But Baroness Blackwood’s commitment to ending the diagnostic odyssey is also a personal one. From childhood, she dealt with numerous health challenges, and in 2017 was diagnosed with Ehlers-Danlos Syndrome (EDS). Acknowledging the difficulties she faced in getting answers regarding her symptoms, Baroness Blackwood considers herself “incredibly lucky” to have a diagnosis when so many never do. But as is the case for most rare diseases, there is no curative silver bullet.
At present “a mere 5% of rare disease patients have an approved treatment,” she stresses “making efforts like the OHC and Genomics England essential to earlier diagnosis and effective treatment.” That is why “the OHC goal of delivering 40 rare disease drugs in the next decade is vital to helping patients in need around the world.”