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Cambridge Rare Disease Summit Oct 23 2017, Robinson College

October 23, 2017 @ 10:00 am - 8:30 pm

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Cambridge Rare Disease Network - Cambridge Rare Disease Summit Oct 23 2017, Robinson College 1Cambridge Rare Disease Network - Cambridge Rare Disease Summit Oct 23 2017, Robinson College 2

Following the success of our 2 previous summits, we are pleased to announce our 3rd annual Cambridge Rare Disease Summit. The CRDN International Summit 2016 has been selected as a finalist for the Communiqué Awards for Excellence in Communications via a Live Event or Stand-Alone Activity

Venue: Robinson College, Cambridge will be hosting our event on 23rd October 2017

Costing: tiered pricing with early bird tickets and discount tickets for patients and patient groups, students and start-ups.

This day long event seeks to create a forum that brings together patient groups, healthcare, academics, researchers, biotech companies, and the pharmaceutical industry in a spirit of collaboration, innovation and passion to re-imagine and re-invent the Rare Disease patient journey.

Theme for Cambridge Rare Disease Summit: “Re-imagining the Patient Journey”

We will provide a morning of exploration of inspirational Rare Disease patient journeys where patients and patient carers have been partners in healthcare and treatment development. Take a walk with us through case-studies from early symptoms, dead-ends and steps forward to diagnosis, patient group formation, campaigning and research to pharma collaboration and drug development.

The afternoon will showcase pioneering work being undertaken in Cambridge and around the world to re-imagine and re-write the endings of Rare Disease Patient journeys from gene editing, drug re -purposing and pharma ‘adoption’ of rare diseases to empowering patient revolution, rare disease search engines and rare disease telemedicine nursing.

NEW FOR Cambridge Rare Disease Summit 2017

Patient groups have an opportunity to showcase posters in a Patient Journey gallery and all delegates will enjoy wide networking opportunities with exhibition stand holders from industry and patient organisations. For poster submissions guidelines see here https://camraredisease.org/index.php/crdn-summit-20..

Students4RareDiseases will be hosting a breakout session from 11 – 12.30pm. A range of speakers will give an overview for foundation doctors, medics and healthcare professionals in early stage training, GP registrars, nurses, pharmacists etc. Hear about the Rare Disease patient journey, the utility of the diagnosis, red flags, the 100,000 Genome Project and family planning https://en-gb.facebook.com/S4RDcam/ students4rarediseases.org/

No Isolation, a Norwegian tech company, will run a workshop showcasing their AV1 Avatar, a small robot designed to reduce isolation and encourage participation and interaction in education and daily life for children with chronic, lifelong illnesses.

We will be showcasing a new genetic rare disease search tool by https://www.mendelian.co/

Followed by a drinks and canape reception in the dining hall on site.

The Cambridge Rare Disease Summit full programme with speakers and timings can be viewed here https://camraredisease.org/index.php/crdn-summit-20…

Cambridge Rare Disease Summit Confirmed Speakers :

Dr Ségolène Aymé – Emeritus Director of Research at the French Institute of Health and Medical Research (INSERM). Expert in residence for rare diseases at the Brain and Spine Institute in Paris, and Founder and Editor-in- Chief, Orphanet Journal of Rare Diseases. Opening keynote speaker

Prof Bobby Gaspar – GOSHCC Professor of Paediatrics and Immunology, Consultant in Paediatric Immunology, Head, Rare Diseases Theme, Head, Molecular and Cellular Immunology Section, Infection, Immunity and Inflammation Molecular and Cellular Section, UCL Great Ormond Street Institute of Child Health

Dr Ana Mingorance – Dracaena Consulting, Chasing cures for neurological and rare diseases and author of eBook #ImpatientRevolution

Dr Rick Thompson – CEO and Head of Research, Finadacure, a Cambridge based charity empowering Rare Disease patients and developing drug re-purposing projects

Neil Dugdale – General Manager, UK and RoI, Sobi, Rare Disease pharmaceutical company

Kay Parkinson – CEO of CRDN and Alstrom Europe

Juliet Moritz – Executive Director, Patient Engagement and Strategic Development, Premier Research

Dr Owen Vaughan – Senior Director, Regulatory Affairs, ProMetic Pharma SMT Ltd

Daniel Lewi – CEO, Cure and Action for Tay-Sachs Foundation

Dr. Ignacio Hernández Medrano – co-founder and medical director of Mendelian.co, an online rare disease search engine developed at Imperial College London

Dr Simon Holden – Consultant Clinical Geneticist, Cambridge University Hospitals Trust

Dr. Gemma Chandratillake – Education & Training Lead – East of England Genomic Medicine Centre

Natalie Rebeyev– Cambridge Consulting Network lead for Rare Disease Nurse Network. PhD student University of Cambridge, Dept of Medicine

Saakshi Chadha – PhD in Medical Sciences at MRC- Cancer Unit. University of Cambridge. Consultant at Cambridge Consulting Network

Steffen Mio Kristiansen – General Manager, No Isolation, UK

Becky Nunn – Trainee Doctor – University of Cambridge

Mabella Farrer – Genetic Counsellor, Addenbrookes

Cambridge Rare Disease Summit Patient Journey Lightning Poster Presentations

  • Bardet -Biedl Syndrome UK – Tonia Hymers
  • Pitt Hopkins UK – Sue Routledge
  • The Teddington Trust – Nicola Miller
  • Vasculitis UK – Lynn Laidlaw and Suzanne Morris
  • Wyburn-Mason Syndrome/Acromegaly – Dan Jeffries


October 23, 2017
10:00 am - 8:30 pm
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Robinson College
Grange Road
Cambridge, Cambridgeshire CB3 9AN United Kingdom
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