Prof Stephen Hawking to Open Cambridge Rare Disease Summit

It has been announced that Professor Stephen Hawking will open a Cambridge summit on rare diseases.

The inaugural Cambridge Rare Disease Summit, at the Cambridge Judge Business School, will take place on Monday 14th September.

Hawking will be in attendance to speak to attendees, as the lead-up to ‘Jeans for Genes Day’, annual fundraising event, continues.

The infamous professor will be just one of the keynote speakers appearing on the day.

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

Professor Hawking was, of course, diagnosed with the rare motor neuron disease at the age of 21, and told that the problem was incurable.

However, this has not diminished his interest in scientific pursuits, and Hawking has gone to live an extremely productive life, publishing some of the most significant scientific research in quantum physics in particular.

The Cambridge Rare Disease Summit will discuss how the 3.5 million other Britons who live with a rare disease can experience the same quality of life that Professor Hawking has evidently enjoyed.

Although the situation that Hawking finds himself in may seem to be extremely rare, in fact the whole concept of rare diseases are in fact far more common than one might imagine.

6,000 rare diseases have already been identified in laboratories, and this means that every British resident has a one-in-17 chance of developing a rare disease at some point during their lifetimes.

However, despite this sobering figure, advances in genetics and genomic medicine ensure that researchers and medics are now extremely well placed to diagnose, treat and even cure rare genetic disorders.

The Cambridge Summit will be a particularly prestigious and valuable event, enabling 150 key stakeholders involved in rare diseases to collaborate.

There is also a huge diversity of attendees, with delegates ranging from those working on drug development, data sharing and parent support, to biotech entrepreneurs, pharmaceutical companies and start-ups.

It is hoped that the summit will both create awareness of rare diseases, and also play a part in forming and bonding a community of active and interested stakeholders in rare disease research and development.

The network is also seeking alternative ways to fund drug discovery programs for rare diseases, often overlooked by more traditional financing due to the lack of significant financial reward in particular.

Kay Parkinson, CEO of the newly-formed Cambridge Rare Disease Network (CRDN) commented on the forthcoming event favourably.

“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,” Kay stated.

Cambridge was considered a natural location for this event, owing to its existing knowledge and expertise in research and industry related to biotechnology.

 
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