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Action Plan brings relief to millions for Rare Disease Day 2022

Action Plan brings relief to millions for Rare Disease Day 2022

England’s first Rare Diseases Action Plan has been published to mark Rare Disease Day 2022 (February 28). New technology and digital tools will support faster diagnosis, and improvements to virtual consultations will make it easier for patients to see multiple specialists at once.

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Cambridge Rare Disease Network to host ‘pioneering’ RAREsummit21

Cambridge Rare Disease Network to host ‘pioneering’ RAREsummit21

Five innovators selected to pitch their rare disease challenge solutions to RAREsummit21’s audience have been selected by judges. The Dragon’s Den-style innovation pitching is one of many components of RAREsummit, which takes place virtually tomorrow (October 7) and is hosted by Cambridge Rare Disease Network (CamRARE).

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Every Cookie is Hope

Every Cookie is Hope

Every cookie is hopeTen-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...

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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

Sarah Lippett will be talking about her book "Puff of Smoke" at RAREfest20““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...

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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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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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