Welcome to

Cambridge Rare Disease Network

Cambridge Rare Disease Network is a platform for change. It is the infrastructure that unites patients, advocates, experts and leaders to address the challenges faced by people affected by rare diseases. By sharing knowledge and experience, and working together, the journey towards better diagnosis, treatment and support for patients and their families is smoother and more certain. 

Cambridge Rare Disease Network - Cambridge Rare Disease Network 1


Sharing experiences helps people connect and deepens understanding. Living with a rare  disease can be scary, overwhelming and isolating. CRDN empowers patients and families to share their experiences with each other and with those professionals whose expertise could help improve diagnosis, treatment and care.

Cambridge Rare Disease Network - Cambridge Rare Disease Network 2


The patient journey runs smoother when stakeholders are informed and working in partnership with patients.  We create events where stakeholders in research and development share the stage with patients and advocates to showcase partnerships, learn from each other and  find ways to collaborate for better patient impact.

Cambridge Rare Disease Network - Cambridge Rare Disease Network 3

SHARING EXPERIENCES, knowledge & innovation

We capture the voices of patients, families and professionals working in the field of rare diseases and share their expertise with you. Keep abreast of  developments in rare disease  research, drug development and advocacy by browsing our  educational talks, short films, articles, reports and reflective blog posts. 

I wanted to thank you wholeheartedly for your brilliant partnership ethos, for organising hugely informative and engaging events to move the rare disease thinking and research forward, and creating the soil in which productive collaborative relationships can grow and flourish.

Grazina Berry • CEO, Aplastic Anaemia Trust

Unique Feet helped me to realise I don't have to be strong all of the time and that I can be human, it's alright. People are doing that face to seem strong but they're crumbling inside, and you realise you should reach out more.

Sue • member of Unique Feet community group

We're starting a new international scientific collaboration, which has evolved from discussions with companies following your CRDN RAREsummit last year and also involves another company following CRDN's invite for me to present at your Companies Forum - so your events have a HUGE amount of value to us!”

Allison Watson • Co-Founder, Ring 20 Research and Support

That was such an amazing event. So well organised. So much varied content. Really, really gripping, moving, exciting, inspiring, colourful, insightful ... and a million other thoughts and feelings throughout the day!

Anna Todd • Cambridge Children’s Hospital, RAREfest20


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Prime Global Logo
Healx logo
LifeArc logo
Alexion AstraZeneca Rare Disease logo
Sobi logo RAREfest20 sponsors
aparito logo RAREsummit21
Big Lottery community fund logo
cambridgeshire community foundation logo
cheffins cambridge
aparito logo RAREsummit21
Kyowa Kirin logo
Congenica logo
Localgiving Foundation logo
cambridgeshire community foundation logo
Amicus Therapeutics logo


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