In January 2018 CRDN visited the 2 day GenomicsFest at ExCel in London hosted by Front Line Genomics. We heard inspiring talks and made great connections for the future. It was exciting to see Rare Disease charities and individuals taking to the stage to share the importance of genomics in diagnosis and personalised treatment and to give the science a human side.
The Transforming Genetic Medicine Initiative have written a great blog about the patient centred focus of the festival which we share here. Read on to see how rare disease charities, individuals and advocates had their say…….
Patient-centered focus at Festival of Genomics
Thanks to http://www.thetgmi.org for allowing us to share their blog
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
With 1 in 17 Britons born with or developing a rare disease, and with medical advances offering exciting new treatments to extend the lives of rare disease patients, we need innovative new options in holistic, patient-centred healthcare – such as rare disease specialist nurses.
Current care options for rare diseases put the burden on the patient to navigate multiple specialists, cover expensive travel and potentially spend long spells in hospital. This results in missed diagnoses, missed opportunities for treatment and leads to higher healthcare costs for patients and healthcare networks.