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3 March, 2015 - 08:33 By Kate Sweeney

Cambridge startup launches rare disease network

Tim Guilliams, keen to spread best practice via new rare disease network

Cambridge startup Healx, which matches safe drugs to rare diseases, is launching a network to improve dialogue and promote best practice in this specialist field of medical technology.

The Cambridge Rare Disease Network (CRDN) aims to link key influencers through a series of events and initiatives, starting early April. Healx is already working on a potential cure for a six-year-old American boy who is the first patient ever to be diagnosed with NGLY-1 deficiency and loss of function.

Healx is liaising with pharmaceutical entrepreneur and world-leading drug repositioning expert David Cavalla to try to help Bertrand Might in his fight against the rare congenital disorder. Bertrand’s parents told Business Weekly that diagnosing the condition proved a lengthy, complex and literally agonising process – and without accurate diagnosis no potential cure could be identified.

Healx believes it may have identified a solution that at least offers hope to the family, but CEO Tim Guilliams believes the company can achieve much more in similar cases globally. The Cambridge Rare Disease Network is a not-for-profit organisation and will be based in Cambridge UK. Guilliams said: “Our mission is to bring together the active stakeholders in rare disease research and development, to foster dialogue and to increase awareness. We will organise events to bring together patients, activists, entrepreneurs, academics, healthcare professionals and policy makers.”

CRDN is officially launching on April 2. The launch event will focus on parent entrepreneurship, with Dr Nick Sireau from the AKU Society, Kay Parkinson from the ASUK Society and Will Evans from Niemann-Pick UK. The event will be hosted by Cambridge University Judge Business School. Guilliams added: “In the future we intend to run monthly events and workshops focusing on different aspects of rare diseases, ranging from data sharing to drug development and patient support.”

CRDN will also host its first annual conference at Clare College, Cambridge – the Cambridge Rare Disease Summit 2015 – on September 15.

Launched in April 2014 as Healx3 by Cambridge and Oxford University alumni, Healx swiftly engaged with two of the world’s largest biopharma companies. The founders combine expertise in biopharma and computer science. The startup has been backed by Accelerate Cambridge and Stevenage Bioscience Catalyst. It also collaborates with Cambridge University bioscience personnel, such as Andreas Bender from the Chemistry Department, who has significant experience in chemical and biological data analysis for bioactive compound selection.

Healthy grant funding has underpinned recruitment and Healx has had paying customers virtually from Day One. Business Weekly understands it is currently in talks with potential VC investors. Healx is shortlisted in the new Life Science Innovation category of the Business Weekly Awards – a prize backed by AstraZeneca and MedImmune. The Award will be presented at the 25th Anniversary celebrations at Queens’ College, Cambridge, on Tuesday March 17.
 

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