Events

Journey of Hope: Ceridwen Hughes at RAREfest20

Journey of Hope: Ceridwen Hughes at RAREfest20

“The importance of diagnosis cannot be underestimated. Not only do you feel like you have something you can put a name to, but it opens doors, not least the ability to connect with others who have that shared experience and knowledge.”– Ceridwen Hughes, Same but...

Cancelled! Postponed! How do we roar for rare in the midst of a crisis?

Cancelled! Postponed! How do we roar for rare in the midst of a crisis?

At CRDN our focus is on raising awareness and building networks to address the unmet needs of those affected by rare disease and the professionals that work with them.  So how do organisations like ours maintain momentum during this extended period of lockdown?   We...

The Hackathon Challenge: Two hours, 252 opinions, one priority

The Hackathon Challenge: Two hours, 252 opinions, one priority

Too many cooks or the perfect recipe for success?Important to every CRDN event is equity of voices and we pride ourselves in bringing together the different rare disease stakeholders on an equal standing. RARESummit 2019 was no different and with innovation and...

RARESummit 2019 – Patients as partners

RARESummit 2019 – Patients as partners

Wellcome Genome Campus hosts CRDN RARESummit 19PASSION LED US HERE A crisp, bright September morning in the calming woodland setting of the Wellcome Genome Campus, Cambridge welcomed a chattering, excited collection of rare disease stakeholders from across the UK and...

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