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Why a regional rare disease charity?

Cambridge Rare Disease Network - About CRDN 1

One in 17 people will develop a rare disease at some point in their lives – that’s 3.5 million in the UK alone and 350 million worldwide.  Most of these diseases manifest in early childhood and many are life-limiting conditions.

Individually the unmet needs of those living with a rare condition are often seen in isolation.  We bring their voices together to create a powerful regional chorus. 

Typically rare disease organisations are either large umbrella groups working at the UK, European, continent-wide or global level or they are disease-specific serving a particular population.

We believe that collectively those affected by different rare conditions and the professionals who work with them can form a powerful regional voice influencing service delivery at every level ensuring their collective needs are met.  

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 advocacy groups making a real and positive difference in the lives of people living with rare diseases.

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Promoting cross-sector collaboration

We  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 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.

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Raising Awareness

Sharing  Cambridge expertise with the world

We create and deliver 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 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 have powerful patient voices and advocacy groups at their heart.

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Building a local rare disease community 

We 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 develop opportunities for adults living with rare conditions to  connect, share experiences and form a collective voice to raise awareness and  improve local services. 

OUR Activites

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Delivering educational and networking events: RAREfest,  our award-winning, public-facing interactive exhibition, talks and film festival; the Cambridge RAREsummit, an acclaimed conference showcasing  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.

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A membership group offering a neutral, collaborative platform and exclusive content  enabling biotech, pharmaceutical and health-related companies to discuss common issues in rare disease drug development and to drive change.

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Identifying gaps in service provision and creating solutions. We have developed and incubated the Rare Disease Nurse Network (RDNN) project, now working independently.

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Providing  weekly activities for children and families affected by any rare conditions though our UNIQUE FEET group.

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Helping raise funds to enable CRDN to to carry out this vital work.