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Cambridge International Rare Disease Summit 2016

October 25, 2016 @ 8:30 am - 5:30 pm

Cambridge Rare Disease Network - Cambridge International Rare Disease Summit 2016 1
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What can Cambridge contribute to global efforts in rare disease research?

Who’s leading the way in collaborative, innovative research, treatment and care for those with rare diseases?

How can we put patients and their families at the centre of all discussions?

Hear from those leading the way in rare diseases 

Where: Robinson College, University of Cambridge

When: Tuesday 25 October 2016

Costs: tiered pricing, with discount tickets for patient support groups, start-ups and students

Following the sell-out success of its first summit in 2015, the Cambridge Rare Disease Network is once again bringing international leaders and local experts together in Cambridge to bridge the gap between research, industry, business and patient groups. 

Anchored by powerful patient voices, this one-day conference will explore:

  • international rare disease innovations
  • new rare disease initiatives on the horizon
  • innovations in health
  • engaging and collaborating with pharma.

A wide delegate base, representing academia, healthcare, industry, business, patients support groups and more will allow delegates to explore potential collaborations and gain a broader understanding of opportunities in rare diseases.

Confirmed speakers include:

  • Avril Daly, Vice President of Eurordis
  • Ben Howlett MP, Chair of All Party Parliamentary Group (APPG) on rare, genetic and un-diagnosed conditions
  • Prof Patrick Maxwell, Regius Professor of Physic and Head of the School of Clinical Medicine of the University of Cambridge
  • Dr Tim Guilliams, CEO of Healx and Chair of CRDN
  • Dr Jonathan Milner, Chairman of Abcam plc and Milner Institute
  • James Taylor, Director of Corporate Development GlaxoSmithKline
  • Dr Andy Richards – Biotech Entrepreneur
  • Julie Walters – Founder of Raremark
  • Dr Lydia Meyer-Turkson – Consultant Business Strategy, Horizon Discovery USA
  • Dr Nick Sireau, Chairman of AKU Society and Findacure
  • Dr Olivier Menzel, President and Founder of BLACSWAN Foundation (Switzerland)
  • Alastair Kent, OBE, Director of Genetic Alliance UK and Chair of Rare Disease UK
  • Dr Paul Tunnah, CEO and Founder of Pharmaphorum Media
  • Karsten Barton, Head of Department, Frambu Centre for Rare Disorders (Norway)
  • Dr Alex Mackenzie – Care for Rare and Vice-Dean Research for the Department of Paediatrics at CHEO (Canada)
  • Dr Larissa Kerecuk – Rare Disease Lead at Birmingham Children’s Hospital
  • Dr Lucy Mackay, Co-Founder of Students4RareDisease
  • Dr Lucy Raymond, Professor of Medical Genetics and Neurodevelopment University of Cambridge 
  • Daniel Lewi, CEO of Cure and Action for Tay-Sachs Foundation
  • Dr Birgitte Volck, Head of Research and Development, Rare Diseases, GlaxoSmithKline
  • Dr David Pardoe, Head of Growth Projects, MRC Technology
  • Prof Steve Jackson, Senior Group Leader and Head of CRUK Laboratories, Wellcome Trust/Cancer Research UK Gurdon Institute

  • Emily Kramer-Kolingoff – Co-Founder and Executive Board Member of Emily’s Entourage

  • Dr Femida Gwadry- Sridhar, Founder and CEO of Pulse Infoframe Inc
  • Rebecca Stewart, Co-Founder and editor of Rare Revolution Magazine and Co-Founder of The Teddington Trust

We are holding a Round Table of Companies inaguaral meeting as a breakout session

Charired by Dr Tim Guilliams, CEO Healx

Attendees include: 

  • Evolution Education Trust – Dr. Jonathan Milner
  • Horizon Discovery and Locus Genetics – Dr Lydia Myer-Turkson
  • GlaxoSmithKline – James Taylor
  • Sobi – Neil Dugdale 
  • Alexion – Sarah Trafford-Jones
  • Raptor Pharmaceuticals – Amjad Hussain
  • Shire – Verity Thomas-James
  • MRC Technology
  • Geneadvisor – Dr Jelena Aleksic
  • Dr Nick Ibery – Royal Society of Medicine
  • New Philanthropy Capital, – Rachel Wharton
  • Findacure – Flóra Raffai
  • CRDN – Kay Parkinson, Dr Moharem El Gihani 
  • Emma Sutcliffe – Patient Centred
  • Dr Eija Makirintala – Altogame Ltd

 We’re also thrilled to host examples of beautiful portrait photos of children with rare and undiagnosed conditions loaned to us by ‘Same But Different’ http://www.samebutdifferentcic.org.uk/rare-project/

Following the formal proceedings we will continue the conversation over drinks at Robinson College. We then invite you to attend our gala dinner in the Crausaz Wordsworth Building to close the evening. 


Robinson College
Grange Road
Cambridge, Cambridgeshire CB3 9AN United Kingdom
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