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In the lead-up to Jeans for Genes Day, Cambridge’s best-known rare disease advocate Professor Stephen Hawking will address the inaugural Cambridge Rare Disease Summit, at the Cambridge Judge Business School on Monday 14 September 2015.

Cambridge Rare Disease Network - Prof Stephen Hawking to address summit on rare diseases 1

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 6,000 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 (CamRARE) 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 CamRARE 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:

  • Parent advocate Dr Matt Might, founder of NGLY1.org
  • Dr Bruce Bloom, CSO of the US drug repurposing charity Cures Within Reach
  • Dr Hermann Hauser, CBE, of Amadeus Capital Partners
  • Alastair Kent, OBE, Director of Genetic Alliance UK and founder of Rare Disease UK

See the full list of speakers at: https://camraredisease.org/conference/#speakers


About the Cambridge Rare Disease Network

The CamRARE is a not-for-profit creating awareness of rare diseases and forming a community of active stakeholders in rare disease R&D that builds on Cambridge’s strength in biotech and research. The Summit is their first major event, and is kindly supported by: Horizon, Alexion, Evolution Education Trust, MRC Technology, Congenica, and Sobi. The CamRARE is also supported by a range of organisations, including: Cambridge Judge Business School, Cures Within Reach, Findacure, GeneAdviser, Genetic Disorders UK, Global Biotech Revolution, Global Genes, Healx, Innovation Forum, One Nucleus, Stevenage Bioscience Catalyst, and Utah Rare.

Find out more about the Cambridge Rare Disease Summit, see the full speaker line-up and register to attend at https://camraredisease.org/conference/

For more information please contact:

Tamzin Byrne, tamzin@scienceinpublic.com.au, +44 (0)7596 035 201