CRDN is pleased to announce our 3rd annual Rare Disease Summit  #CRDN2017

CRDN Summit 2016 Finalist in the stand-alone event category of the Communique Awards!


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.

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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: “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 drug re -purposing and pharma ‘adoption’ of rare diseases to empowering patient revolution.

NEW FOR 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 

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 

Norwegian tech company No Isolation will be running a workshop session showcasing the benefits of their AV1 Avatar in reducing isolation and encouraging participation and social engagement for children with chronic and lifelong conditions. See it’s impact on young people with rare disease in the news

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

View the full programme here

Confirmed Speakers

  • Dr Ségolène Aymé -Founder of Orphanet
  • Dr Bobby Gaspar – Prof and Consultant in Paediatric Immunology, Head of Rare Diseases Theme, Head of Molecular and Cellular Immunology  UCL and GOSH
  • Dr Ana Mingorance – Dracaena Consulting, Chasing cures for neurological and rare diseases
  • Dr Rick Thompson – CEO, Finadacure
  • Neil Dugdale – General Manager, UK and RoI, Sobi
  • Kay Parkinson – CEO, CRDN and Alstrom Europe. Founder Alstrom UK
  • Dr Owen Vaughan – Senior Director, Regulatory Affairs, ProMetic Pharma SMT Ltd
  • Dr Sanjay Patel – Senior Director, ProMetic Pharma SMT Ltd
  • Daniel Lewi – CEO, Cure and Action for Tay-Sachs Foundation
  • Alastair Kent OBE – Chair of Cambridge Rare Disease Network
  • Juliet Moritz – Executive Director, Patient Engagement and Strategic Development, Premier Research
  • Dr Ignacio Hernández Medrano – CMO co-founder and medical director of
  • Dr Saakshi Chadha – Consultant at Cambridge Consulting Network for Rare Disease Nurse Network
  • Natalie Rebeyev – Cambridge Consulting Network lead for Rare Disease Nurse Network

Breakout Sessions Speakers

  • Dr Simon Holden – Consultant Clinical Genetisist, Addenbrookes
  • Gemma Chandratillake – Education and Training Lead – East of England Genomic Medicine Centre
  • Mabella Farrer – Genetic Counsellor Addenbrookes
  • Becky Nunn – Trainee Doctor – University of Cambridge
  • Mio Kristiansen – Country Manager UK, No Isolation

View the full list of speakers here