Contact CamRARE

Contact CamRARE

A network that improves rare lives by

inspiring you to take action

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A network that improves rare lives by

promoting collaboration

FIND OUT MORE

A network that improves rare lives by

supporting families

FIND OUT MORE

A network that improves rare lives by

supporting families

FIND OUT MORE

A network that improves rare lives by

inspiring you to take action

FIND OUT MORE

A network that improves rare lives by

promoting collaboration

FIND OUT MORE

A network that improves rare lives by

supporting families

FIND OUT MORE

A network that improves rare lives by

inspiring you to take action

FIND OUT MORE

A network that improves rare lives by

promoting collaboration

FIND OUT MORE

Making rare diseases visible and vocal, SEEN AND HEARD

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

Buildings supportive communities

We know that living with a rare disease can be scary, overwhelming and isolating.

We’re building a thriving network of individuals, families, advocacy groups and the professionals who work with them so they can engage, listen to and support each other better.

Building supportive communities for better patient outcomes.

Cambridge Rare Disease Network - Cambridge Rare Disease Network 2

Educating, connecting, collaborating

Each rare disease affects few people but with 8000 different conditions affecting 400 million people worldwide, they are individually rare, but collectively common.

Only 5% of these rare diseases have a treatment. We want to change that.

We’re gathering leading scientists and the latest technology together with patients and healthcare to offer new hope for treatments and better co-ordination of care.

Meet our networks
Discover our events

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 CamRARE RAREsummit last year and also involves another company following CamRARE'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

With thanks to OUR CURRENT SPONSORS AND GRANT FUNDERS

EET Logo
genomics england logo
Healx logo
LifeArc logo
Alexion AstraZeneca Rare Disease logo
Sobi logo RAREfest20 sponsors
aparito logo RAREsummit21
EAHSN Logo
Cambridge Rare Disease Network - Cambridge Rare Disease Network 3
Amicus Therapeutics logo
Congenica logo
Cambridge Rare Disease Network - Cambridge Rare Disease Network 4
cambridgeshire community foundation logo
Kyowa Kirin logo
Cambridge Rare Disease Network - Cambridge Rare Disease Network 5
Cambridge Rare Disease Network - Cambridge Rare Disease Network 6
cambridgeshire community foundation logo
A cartoon zebra next to a speech bubble with rare pateitn voice written inside
Cambridge Rare Disease Network - Cambridge Rare Disease Network 7
medidata logo
Cambridge Rare Disease Network - Cambridge Rare Disease Network 8

With thanks to OUR CURRENT SPONSORS AND GRANT FUNDERS

EET Logo