Annually we hold an international rare disease summit, bringing together the rare disease community in Cambridge from academia, healthcare, industry, business and patient support networks.
We strive to bring the inspiring and topical speakers from our thriving Cambridge community of rare disease experts as well as international speakers undertaking ground-breaking research and work. We look forward annually to a day full of robust discussion and networking.
We launched our inaugural summit at Cambridge Judge Business School with speakers from the prestigious Cambridge Cluster of industry professionals including Dr Herman Hauser, KBE Co-Founder of ARM and Partner at Amadeus Capital Partners, Dr Darrin Disley, CEO of Horizon Discovery, Martino Picardo, CEO of Stevenage Bioscience Catalyst and Dr Jonathan Milner, founder of Abcam.
The opening keynote was delivered by Associate Prof Matt Might – Parent Entrepreneur and Founder at NGLY1 in the US and the closing keynote address was given by Prof Stephen Hawking CH, CBE, FRS, FRSA, Centre for Theoretical Cosmology at University of Cambridge who himself lives with a rare disease. For the full speaker list and programme see the CRDN Summit-Brochure Sept 2015
We gathered speakers from around the world with representatives from the rare disease community across Europe and the US. Emily Kramer-Golingkoff MBE came from the US to inspire us with her passion and drive as founder of Emily’s Entourage and her work in personalised medicine. Dr Olivier Menzel, President and Founder of BlackSwan Foundation, Switzerland, Karsten R Barton of the holistic Frambu Centre for Rare Disease in Norway and Dr Alex MacKenzie from Care for Rare Canada shared news of their innovative work in the rare disease field.
Powerful patient advocate and patient group voices set the scene for the day followed by panels exploring personalised medicine, innovations in health and international innovations. The day closed with a ‘Bridging the Patient-Technology Gap’ panel chaired by James Taylor, Director of Corporate Development, GlaxoSmithKline and a closing keynote from Ben Howlett MP, Chair of the APPG for rare, genetic and un-diagnosed conditions.
Havas Life Medicom provided superb pro-bono support, once again, to design our conference materials and supported our entry to the Communique Awards where we were finalists in the ‘Stand-Alone Event’ category for excellence in medical communications.
We launched our Round Table of Companies concept with an open breakout discussion session and welcomed 20 patient group and business exhibition stands to the networking space for the first time. For the full speaker list and programme see the CRDN_Summit Delegate Booklet 2016
Theme: “Re-imagining the Patient Journey”
Our summit 2017 provided a morning of exploration of inspirational Rare Disease patient journeys where patients and patient carers have been partners in healthcare and treatment development. Attendees took 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.
For the full programme and speakers see the delegate booklet
The afternoon will showcased 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.
We launched our Patient Journey Gallery, a poster exhibition with a difference where patients and patient groups will had the opportunity to exhibit the journey with particular focus on symptoms which require treatment – these were circulated as a 52 page booklet at the summit, posters were exhibited at the summit, and 5 patient groups were selected to present a 5 minute pitch to the audience on the day. Our aim was to generate collaborations, raise awareness and support the process of treatment development for more rare, genetic and undiagnosed diseases.
All delegates enjoyed wide networking opportunities with exhibition stand holders from industry and patient organisations and a canape and drinks reception following. We used Glisser Technology to aid delegate interaction during lectures and panels in the summit this year.
Feedback from the summit was extremely positive. A broad group of stakeholders attended and shared their 3 wishes for the future for those living with rare diseases.