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30 September, 2016 - 11:25 By Kate Sweeney

Global experts in Cambridge rare disease summit

cambridge rare disease network

Internationally renowned experts are set to address innovations in the diagnosis and treatment of rare diseases in a Cambridge summit next month.

Cambridge Rare Disease Network (CRDN) has just announced details of its second International Rare Disease Summit – to be held on Tuesday October 25 at Robinson College, Cambridge.

A key event in the rare disease calendar, the summit brings together international leaders and local experts to bridge the gap between academia, healthcare providers, private sector companies, patient support groups and other interested parties. It aims to facilitate cross-stakeholder collaboration known as collective intelligence.

Collective intelligence, the amalgamation of shared thinking and the use of technologies in order to go beyond the capabilities of any individual person, has untapped potential in the field of rare disease and if utilised properly could fast track diagnosis and treatment discoveries.

Avril Daly, vice-president of The European Organisation for Rare Diseases (EURORDIS) will provide the opening keynote speech. She will also lead a pharmaceutical industry round table discussion about the next steps in rare disease drug development, offering private sector companies the chance to collaborate on important areas of unmet medical need.

“Rare diseases do not receive the time and funding they deserve,” said Yann Le Cam, CEO of EURORDIS. “The CRDN summit provides a unique opportunity for the congregation of vital healthcare players.

“We need to find ways of reconciling wider access to orphan medicines with the need to make health systems sustainable. Cross sector dialogue is essential in the quest for improved diagnosis and treatment for rare disease patients.

“It’s vital that we now work together to see these advances make the leap from the lab bench to the bedside resulting in quality of life enhancement.”

One in 17 people will develop a rare disease at some point in their lives – that’s 3.5 million people in the UK alone. Most of these diseases manifest in early childhood and many are life-limiting conditions that can take many years to diagnose.

Brexit uncertainty further adds to the obstacles the rare disease community is facing in Europe; it has given rise to big questions over the funding of treatment for rare diseases.

Kay Parkinson, CEO of CRDN highlights the importance of unity at a time of such uncertainty: “CRDN’s goals for the future definitely include the development of a regional network for rare disease patients so that they have a collective voice as well as bringing pharma companies together. 
“With Brexit it’s even more important that we get a strong voice from companies in the UK working together for the benefits of patients with rare diseases.

“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.“

Ben Howlett, chair of All Party Parliamentary Group (APPG) on rare, genetic and un-diagnosed conditions will offer a political perspective in a closing keynote speech at the summit.

“Rare diseases need new thinking,” states Kay Parkinson. “From the point of view of a patient struggling for a diagnosis, the system of seeing your GP and being referred to assorted consultants means the patient is treated as various parts and this misses the whole.

“Rare disease patients just don’t have time on their side for this. Our international summit aims to bring the best minds in the field together so that new solutions can be found and found faster.”

Following the sell-out success of its first summit in 2015, the CRDN is looking forward to hosting key rare disease speakers including Professor Patrick Maxwell, Alastair Kent (Director of Rare Disease UK and Genetic Alliance UK), Karsten Barton (Frambu Centre for Rare Diseases), Daniel Lewi (founder of the Cure and Action for Tay-Sachs Foundation).

Anchored by powerful patient voices, the one-day conference will explore International rare disease innovations, new rare disease initiatives on the horizon, innovations in health and collaborations with pharma.

Tickets can be bought through the CRDN Eventbrite page.

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