Sep 11 2015
In the lead-up to Jeans for Genes Day, Cambridge’s best-known rare disease advocate Professor Stephen Hawking will open the inaugural Cambridge Rare Disease Summit, at the Cambridge Judge Business School on Monday 14 September
Professor Hawking was famously diagnosed with the rare motor neuron disease at 21, and was told science had no answers. He has of course gone on to live a long and productive life, and the Cambridge Rare Disease Summit will discuss how to make this a reality for the 3.5 million other Britons who live with a rare disease.
At the summit, hosted by the Cambridge Rare Disease Network, international experts will join local leaders to discuss innovative treatments for rare diseases. With more than 6000 rare diseases already identified, we each face a one in 17 chance of developing a rare disease; however recent advances in genetics and genomic medicine mean that scientists are better placed than ever before to diagnose, treat and potentially cure rare genetic disorders.
The summit will bring together more than 150 key stakeholders involved in rare diseases, ranging from those working on drug development, data sharing and parent support, to biotech entrepreneurs, pharmaceutical companies and start-ups.
Kay Parkinson, CEO of the newly-formed Cambridge Rare Disease Network (CRDN) said the summit will help them to create awareness of rare diseases and form a community of active stakeholders in rare disease research and development.
“As parent to two children who were given a late diagnosis of the ultra rare Alström Syndrome, I think it’s crucial to foster dialogue, find solutions and increase awareness of the huge social and therapeutic unmet needs around rare diseases,” said Kay.
The CRDN builds on the Cambridge area’s strengths in research and industry and on the success of the area’s biotech cluster. The network is also looking to find alternative ways to fund drug discovery programs for rare diseases, often overlooked by more traditional financing due to the lack of large-scale reward.
As well as Professor Hawking, keynote speakers will include:
Dr Matt Might, parent advocate, founder of NGLY1.org
Dr Hermann Hauser CBE, Amadeus Capital Partners
Alistair Kent OBE, Director of Genetic Alliance UK and founder of Rare Disease UK