We are proud of our forward-thinking and unique events which provide a forum for all stakeholders to learn, interact and collaborate, but don’t just take our word for it…
I attend several rare disease meetings every year and the summit had the most interesting programme that I’ve seen in a long time. The key for me was the authenticity and passion that we got from the speakers, both from the patients and the scientists.
Anna M, NFP scientific officer, CRDN Summit 17
A highlight of the Orphan calendar. Up there with Bio.
Richard I, industry professional, CRDN Summit 17
Cambridge Rare Disease Network delivered a lot on a tight budget, which was particularly impressive. It was fantastic that new working collaborations were formed from the meeting.
Communique Awards 2018 judging panel
RAREsummit19 is a 1 day summit focusing on patient-centricity in rare disease progresS
What if we were able to share information with the power to revolutionise the current rare disease landscape? What if we could provide solutions to patients now, answering their pressing questions about their disease, care, and treatment? What if we could ensure that patients and advocates played an equal and vital role in the development of drugs, assistive technologies and healthcare? Rare disease patients and their families are tired of waiting for answers and the slow pace of change. They want to be involved and share their lived experiences to help companies, researchers and healthcare professionals find answers and solutions. Hear from, learn from and engage in cross-sector activities with a range of stakeholders: patients; patient advocacy groups; researchers; health care professionals, tech and pharma companies who are leading the way in pioneering partnerships to accelerate change.
Join us at the Wellcome Genome Campus: a hub of life-changing science. We think it’s the perfect venue to make progress for rare diseases.
Thought leader Keynote talks
Moderated discussion panels
Charity & company exhibits
Drinks & canapes reception
Morning Session: Patients as partners in searching for a cure
Patient engagement and partnership is an important aspect in the development of products and management of disease by the bio-pharmaceutical sector.
There has been a movement towards more patient-centred practices by the industry over the last few years with varying degrees of success and engagement. In reality, engagement has often been restricted to specific activities related to study design, recruitment and participation. But are some leading the way for others?
This morning session will explore the spectrum of opportunities for patients, patient organisations and carers to be involved in the drug development process. We will highlight examples of best practice to inspire and motivate patients to find their own pathway in partnering and to encourage professionals to re-evaluate the ways in which they can facilitate and support patient partnerships.
During an extended lunch, delegates enjoy networking and browsing charity and company stands and a patient journey poster exhibition. For our summit 2017, 52 patient journey posters were created by various rare disease patient groups and individuals. Some of these will be displayed along with a new collection.
Afternoon Session: Patients as co-designers of technology and care
For many living with a rare condition, improving quality of life is a priority. Through short talks, we will explore successful patient partnerships in technology design, personalised care and clinical studies which improve accessibility, symptoms and lived experiences.
The hackathon challenge
The day will culminate in a ‘hackathon’ activity. So what’s a hackathon? In a nutshell, cross-sector delegate teams will work together to create an innovative solution to a challenge, employing their diverse experience, skills and approaches and applying their learning from the day to best effect. Summit speakers, CRDN team members and local accelerator programmes will mentor groups, providing support and guidance to develop solutions which are patient-focused and user-centred.
Selected teams will have the opportunity to pitch their idea on stage. We aim for delegates to be inspired to develop this cross-sector approach with patients as equal and vital partners.
The day will close with a drinks and canapes reception. Delegates enjoy networking, consolidating learning from the day and developing partnerships for the future.
The aims of RAREsummit19
to provide a toolkit of practical strategies to help educate, inspire and empower all rare disease stakeholders
to give stakeholders the knowledge and skills to ensure their practices involve patients and their advocates as essential partners
learn something new, be inspired, take away practical strategies and fresh ideas, add value, collaborate
hear from and put questions to key opinion leaders and vote and share your views through Q+A and event technology
Prof. Alan Barrell
Chairman, prof, healthcare & biotech leader & entrepreneur
Dr. Tim Guilliams
Founder, trustee & biotech CEO
Dr. Sarah Leiter
Trustee & medical doctor
Dr. Jonathan Milner
Trustee & biotech entrepreneur
Prof. Tim Cox
Trustee & consultant physician
Dr. Gemma Chandratillake
Trustee & genomics ed expert
Trustee & rare disease parent
Dr. Ron Jortner
Trustee & biotech CEO
Graphic and website designer
Dr. Joanna Segieth