We build cross-sector networks to improve outcomes for people with rare diseases
One in 17 people will develop a rare condition at some point in their lives – that’s 3.5 million in the UK alone and over 350 million worldwide. If we were to take into account their close families, we could estimate that one in five of us will be impacted by a rare condition. Individually the unmet needs of those living with a rare condition are often seen in isolation. Cambridge Rare Disease Network brings their voices together to create a powerful 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 vital 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. 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 living 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
Supporting Community
We support people living with and families affected by rare diseases at a regional level. Our ‘Unique Feet’ community group offers a welcoming environment where families can feel connected, understood and supported, empowering them to be effective advocates
Raising Awareness
We raise awareness and facilitate cross-sector collaboration through a programme of 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
Collaborating for Impact
We engage with representatives from companies, researchers, government, and patient groups through our Companies Forum, to provide a platform for learning and networking in the rare diseases space
Collective Voices
We act as a voice for people living with rare conditions, their families and the patient groups who support them to enable solutions and identify gaps in support, care, education and integration
We strive for a world where people with rare diseases are valued and supported
EDUCATING
Delivering educational and networking events
COMPANIES FORUM
A collaborative membership group for biotech, pharmaceutical and health-related companies to address common issues
RESEARCH
Identifying gaps in service provision and creating solutions through partnership research projects
buildING a regional Community
Providing regular activities for children and families affected by any rare conditions though our Unique Feet group
A PHILANTHROPIC COMMUNITY
Raising funds to enable CamRARE to carry out its vital work