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We build cross-sector networks to improve outcomes for people with rare diseases

To join our networks

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It’s estimated that one in 17 people will develop a rare condition at some point in their life – that’s around 3.5 million in the UK alone, and over 350 million worldwide. If we were to consider their close families, we could estimate that a rare condition will impact one in five of us. Individually the unmet needs of those with a rare condition are often seen in isolation.  Cambridge Rare Disease Network brings their voices together to create a powerful chorus to demand and create change.

We believe that collectively those affected by different rare conditions and the professionals who work with them can significantly influence 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 vital that health, education and social systems are aware of progress and 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.  CamRARE brings together stakeholders from families, research, industry, business, healthcare and patient advocacy groups making a real and positive difference in the lives of people with rare diseases.

We put those living with rare conditions at the heart of everything we do. We’re creative, innovative, and boldly challenge the status quo

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Supporting Families

We support people with and families affected by rare diseases across the East of England region. Our ‘Unique Feet’ community group offers a welcoming environment where families can feel connected, understood and supported, empowering them to be effective advocates

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Raising Awareness

We raise awareness and facilitate cross-sector collaboration through our innovative educational and networking events such as RAREfest, RAREsummit and regular smaller events. We co-host events with others to reach a more diverse audiences

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Networking with Impact

Through our Companies Forum meetings, we provide a platform for symbiotic learning and impactful networking for representatives from pharmaceutical, biotechnology, and healthcare companies operating and patient groups in the rare diseases space

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Enabling 

solutions 

By listening to our community and undertaking research. we identify gaps in support, care, education and integration. We then ensure that those who are unheard are given a voice and those who can help are given access to people with rare diseases to enable patient-centred solutions

We strive for a world where people with rare diseases are valued and supported 

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EDUCATING

Delivering educational and networking events

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COMPANIES FORUM

A collaborative membership group for biotech, pharmaceutical and health-related companies to address common issues

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RESEARCH

Identifying gaps in service provision and creating solutions through partnership research projects

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buildING a regional Community

Providing  regular activities for children and families affected by any rare conditions though our Unique Feet  group

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A PHILANTHROPIC COMMUNITY

Raising funds to enable CamRARE to carry out its vital work