The Cambridge Rare Disease Network is a newly established charity working to build a regional community of people in Cambridgeshire to address the unmet needs of rare disease patients, their families and the professionals who work with them.
We do this through community activities, awareness raising events and closer collaborations with scientists and researchers developing new treatments. We will give patients and carers a united regional voice to help develop user-led services.
Our trustees include some of the UK’s foremost experts in rare diseases, and our founding members come from diverse backgrounds in academia, business, healthcare and patient support networks.
Medical research and drug development have transformed the outlook of countless people living with diseases that were formerly untreatable. Our challenge now is to develop a vibrant, informed and active regional rare disease patient community and create a climate that fosters innovations in health, education and social care through providing widespread community events and activities and stimulating interest and awareness in the unmet therapeutic needs of patients.
Our charity objects
As a registered charity in the UK(number 1166365), our objects are:
- The relief of sickness of persons with rare diseases, in particular but not exclusively by the provision of support, advice and information for such persons, their families, carers and those working with affected individuals.
- To advance the education of the public in general on the subject of rare diseases and related syndromes and to promote research in that subject and to publish the useful results.
We will build a regional user-led rare disease community in Cambridgeshire, bringing together people from academia, healthcare, industry, businesses and charities ensuring that the voice of people living with rare disease is at the core of all our discussions, events and activities.
We will support professionals working to understand and treat rare diseases in Cambridgeshire, as well as those living with rare disease in Cambridgeshire, with both targeted support programs and awareness raising activities. We have been working with student organisation Cambridge Consulting Network to assess the need for a home nursing service for those living with rare disease and aim to establish a dedicated rare disease home tele-medicine nursing service.
Education is a key aim of CRDN as there is so much unknown about rare diseases. The aim of CRDN is to continue to offer educational events including our annual summit. Through offering international speakers, unlocking the potential of the Cambridge Cluster, the University of Cambridge and the vibrant biotech business community, new technologies can now help bring this information to the global rare disease community.
To achieve these aims, we are planning a series of activities in the next 12 months:
- Developing a Regional Development programme and stakeholder advisory board.
- Developing a Companies Forum which will offer a forum for pharmaceutical companies to discuss common issues in rare disease drug development and drive change. We will provide the secretariat for this and access to patients and patients organisations
- Host an annual Cambridge International Rare Disease Summit, bringing the diverse international rare disease community together in Cambridge to learn from one another and discover new perspectives on rare diseases.
- Build a philanthropic community for rare diseases in Cambridge through charity fundraising events – two fundraising events are in progress through our JustGiving pages and we are exploring a range of local fundraising opportunities
- Make the case for support services in Cambridgeshire, for example, by working with the patient advisory group to create a regional user-led voice and working with professionals such as the Cambridge Consulting Network to research the need for a rare disease home nursing service.
Why rare diseases?
One in 17 people will develop a rare disease at some point in their lives – that’s 3.5 million in the UK alone. Most of these diseases manifest in early childhood and many are life-limiting conditions.
Currently no regional community groups exist for rare diseases, individually their unmet needs are seen in isolation, collectively patient and their families can form a powerful regional voice influencing service delivery at every level and ensuring their collective needs are met. The Cambridgeshire pilot has the potential to become a model for many other regions across the UK.
With recent advances in medicine and genetics, we’re more able than ever before to diagnose and treat rare diseases. We can even see cures on the horizon. Patients are now living longer, however; unfortunately current health, education and social systems are failing to plan effectively for this ground shift change.
It’s vital that we now work together to see these advances make the leap from the lab bench to the bedside and in quality of life enhancement. The CRDN brings together stakeholders from research, industry, business, healthcare and patient charities making a real and positive difference in the lives of people living with rare diseases.