2016 Summit Programme

Cambridge International Rare Disease Summit 2016

The programme features international guests and local experts covering all the active sectors in rare disease research and advocacy.

Tuesday 25 October 2016

Robinson College, Cambridge UK

08:30 – 09:00 | Registration and Welcome Coffee

09:00 – 09:20 | Welcome Address

Welcome from CRDN:

09:20 – 09:40 | Keynote

Avril Daly, Vice President of EURORDIS

09:40 – 10:00 | Keynote

Professor Patrick Maxwell, Regius Professor of Physic and Head of the School of Clinical Medicine of the University of Cambridge

10:00 – 11.10 | Panel – Powerful Voices

Chair: Alastair Kent OBE, Director of Rare Disease UK and Genetic Alliance UK, incoming Chair of CRDN

Speakers:

11:10 – 11:40 | Coffee break

11:40 – 12:40 | Panel – ‘Riding the personalised medicine wave to accelerate progress in rare disease treatment’

Chair: Dr Paul Tunnah, CEO & Founder of Pharmaphorum media

Speakers:

12:40 – 14:10 | Lunch break

Networking Lunch
Exhibition Stands
SameButDifferent Photography Exhibition

14:10 – 15.10 | Round Table of Companies: breakout room session

A round table discussion for pharma company representatives about next steps in rare disease drug development.

Co-Chairs: Dr Tim Guilliams, CEO of HealX Ltd and Mrs Kay Parkinson, CEO of CRDN

Inaugural group to include,  CRDN – Kay Parkinson,  Abcam + Healx – Dr. Jonathan Milner, Horizon Discovery and Locus Genetics – Dr Lydia Meyer-Turkson, Sobi –Neil Dugdale, Alexion – Sarah Trafford-Jones, Raptor Pharmaceuticals – Amjad Hussain, Shire – Verity Thomas-James, MRC Technology, Geneadvisor – Dr Jelena Aleksic, Royal Society of Medicine – Dr Nick Ibery, New Philanthropy Capital – Rachel Wharton, Findacure – Flóra Raffai, Dr Moharem El Gihani – CRDN Steering Group, Dr. Paul Tunnah – Pharmaphorum, Anna Somuyiwa – Biopointis Alliance, Emma Sutcliffe – Patient Centred, Dr.Eija Makirintala – Altogame Ltd

Read more…

14:10 – 15:00 | Short talks – International Innovation

Chair: Dr Nick Sireau, Chairman of AKU Society and Findacure

Speakers:

15:00 – 16:00 | Short talks – Innovations in Health

Chair: Dr Gemma Chandratillake, Education and Training Lead for the East of England Genomics Medicine Centre

Speakers:

16:00 – 16:20 | Afternoon break: ‘Unique Feet’ – A Tale of Rare Dancers

16:20 – 17:10 | Panel – ‘Bridging the Technology-Patient Gap’

Chair: James Taylor, formerly Director Corporate Development, GSK Biologicals

17:10 – 17:30 | Closing Keynote

Ben Howlett MP, Chair of All Party Parliamentary Group (APPG) on rare, genetic and un-diagnosed conditions

17:30 – 19:00 | Drinks reception

Crausaz Wordsworth Building at Robinson College

19:00 – 22:00 | Gala dinner

Crausaz Wordsworth Building at Robinson College