We collaborated with Lucia Tambini, filmmaker producing films for charities including Oxfam, Tourettes Action, SeeAbility and Walk the Walk, to capture the essence of our annual summit in 2017 and what it is about our city of Cambridge which offers great opportunities to drive change in Rare Diseases.
The theme of CRDN2017 was ‘Re-imagining the Patient Journey’ and we worked hard to give patients and patient groups a platform and voice at the event through the Patient Journey Poster Exhibition and the Lightning Pitches element of the day.
For those who attended, take a look to see if you made it on film! For those who were unable to attend but are curious, watch the film and be inspired to attend this years RareFest event – a weekend of celebration of everything rare on 30 Nov and 1 Dec 2018.
Following the success of our 2 previous summits the Cambridge Rare Disease Network is pleased to announce our 3rd annual International Rare Disease Summit.
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: “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.
Patient groups a chance 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.
Followed by a drinks and canape reception in the pleasant surroundings of the Crausaz Wordsworth building on site.
Confirmed Speakers with more pending:
- Dr Ségolène Aymé -Founder of Orphanet
- Dr Kate Bushby – Professor of Neuromuscular Genetics, Newcastle University John Walton Centre for Muscular Dystrophy Research
- Dr Ana Mingorance – Dracaena Consulting, Chasing cures for neurological and rare diseases
- Dr Rick Thompson – Head of Research, Finadacure
- Neil Dugdale – General Manager, UK and RoI, Sobi
- Kay Parkinson – CEO, CRDN and Alstrom Europe
- 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