Patient Groups

Every Cookie is Hope

Every Cookie is Hope

Oct 28, 2020

Ten-year-old Dana from Boulder, Colorado, is no ordinary kid. In fact, she’s done something extraordinary in the quest to find treatments for rare diseases. What started out as a fundraiser to help her friend Mila has now turned into a lucrative non-profit cookie...

A Puff of Smoke at RAREfest20: A comic book on being undiagnosed

A Puff of Smoke at RAREfest20: A comic book on being undiagnosed

Oct 27, 2020

““Too often you’re seen as a number, rather than a human being. That needs to change.” – Sarah Lippett, Artist, Illustrator, Author and owner of two rare diseasesIf you are a young person on your diagnostic journey or you've travelled that path yourself or with a...

Journey of Hope: Ceridwen Hughes at RAREfest20

Journey of Hope: Ceridwen Hughes at RAREfest20

Oct 1, 2020

“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...

COVID-19 and it’s Impact on the Rare Disease Community: Insight

COVID-19 and it’s Impact on the Rare Disease Community: Insight

Jun 9, 2020

The COVID-19 pandemic has altered the lives of just about everyone, especially patients in receiving continued treatment and care. But what does it mean for patients who already have trouble accessing therapies or with finding and engaging with others like them? Cambridge Rare Disease Network provides insight.

Unique Feet: Life may not be the party we’d hoped for …

Unique Feet: Life may not be the party we’d hoped for …

Dec 10, 2019

but while we’re here we should dance!In 2015, in response to an invitation to take part in a charity ball, CRDN took the step to create a small Cambridge based dance group for children with a range of rare conditions as a place where they could express themselves....

RARESummit 2019 – Patients as partners

RARESummit 2019 – Patients as partners

Oct 7, 2019

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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