Why a regional rare disease charity?
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 and individually their unmet needs are seen in isolation. We believe that collectively those living with rare conditions 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 so it is important that health, education and social systems plan effectively to keep pace with these advances to ensure the best care.
It’s vital that we now work together to see these advances make the leap from the lab bench to the bedside and enhance quality of life. 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.
Promoting cross-sector collaboration
We aim to bring together all stakeholder groups involved in rare diseases in a spirit of collaboration and understanding by providing opportunities to share, learn, engage and be innovative together to improve the lives of those affected by rare disease.
We will ensure that the voice of people living with rare conditions is at the heart of all our discussions, events and activities as experts and valued partners.
Sharing Cambridge expertise with the world
We aim to offer exceptional, engaging and thought-provoking educational events to help address knowledge gaps and to raise awareness about rare disease amongst health professionals, academics, industry, policy makers and the wider public . We’ll provide a platform for UK and international thought leaders and showcase the potential of the Cambridge Cluster – the University of Cambridge, Biomedical Campus and vibrant biotech community on our many Science Parks. Events will have powerful patient voices and advocacy groups at their heart.
Building a local rare disease community
We aim to support children and families living with rare disease in our local community by providing activities to reduce isolation, offer peer support, build a community and give them a place to belong.
We’ll develop opportunities for adults living with rare conditions to connect, share experiences and form a collective voice to raise awareness and improve local services.
through educational and networking events: RAREfest, a public-facing interactive exhibition, talks and film festival; the Cambridge Rare Disease Summit, an acclaimed summit with international and UK-based thought leaders alongside powerful patient voices; a Rare Disease Day lecture and networking event; short evening and half day events throughout the year
COMPANIES FORUM meetings…
offering a neutral, collaborative platform for pharmaceutical, biotech and health-related companies to discuss common issues in rare disease drug development and to drive change
RESEARCH and PROJECT DEVELOPMENT…
identifying gaps in service provision and creating solutions. We have developed and incubated the Rare Disease Nurse Network (RDNN) project, now working independently
CHILDREN and FAMILIES…
attend our weekly activity group, Unique Feet
A PHILANTHROPIC COMMUNITY…
helps raise funds for CRDN