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Dr Melita Irving- The DNA Doc at RAREfest20

Dr Melita Irving- The DNA Doc at RAREfest20

Known as the DNA doctor, Melita Irving is passionate about … well, DNA! She works as a consultant in clinical genetics at Guys and St Thomas’s Hospital, specialising in conditions that affect the skeleton. Last year Melita’s book ‘The Human DNA Manual’ was published...

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Every Cookie is Hope

Every Cookie is Hope

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...

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

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

““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...

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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...

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New Scientist magazine: Rare disease campaign 2020

New Scientist magazine: Rare disease campaign 2020

CRDN were delighted to recently take part in a new Rare Disease campaign in the New Scientist Magazine published on 24 Sept. It is dedicated to raising awareness of rare diseases featuring exclusive content from key thought leaders (including CRDN!). It discusses the...

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Rare diseases: Making the unseen seen

Rare diseases: Making the unseen seen

Contrary to the isolation of lockdown, a vibrant and vital new collaboration emerged. Action for Rare Disease Empowerment (ARDEnt) is a cross-sector coalition of 30 UK-based experts involved in rare diseases. Concerned at the impact of COVID-19 on those affected by...

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Meet two of the beating hearts behind CRDN

Meet two of the beating hearts behind CRDN

For third sector organisations, trustees are the beating hearts behind the scenes sharing ultimate responsibility for governance and direction.  CRDN is proud to have such a talented board at its helm and  we caught up with two of our Trustees, Dr Sarah Leiter and...

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

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

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....

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If we all got involved, imagine the difference we could make? Don’t just follow us, interact with us and join our thriving rare disease community! There’s lots of ways right here to begin your journey with us…

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