Blog
UK Government Launches Rare Diseases Framework 2020
On the 9th Jan 2021, the Department of Health and Social Care has published the UK Rare Diseases Framework, which replaces the previous UK Strategy for Rare Diseases published in 2013.
Keeping people with rare diseases connected: The challenges they face during the pandemic
“Only 5% of all rare conditions have an authorised treatment and many affected children don’t survive until five years of age. This fragile ecosystem has been shattered further due to COVID-19 and the global response to it. Patients have gone undiagnosed as genomics clinics closed and health professionals were redeployed.”
Cecily Morrison – Inclusive Design is About Taking a Disability-first Approach
Cecily Morrison is a principal researcher at Microsoft Research in Cambridge. She leads a multi-disciplinary team that innovates new technologies to enable people. Last month Cecily was awarded an MBE for services to inclusive design. She and her team are exhibiting...
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...
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...
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...
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...
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...
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...
Dr. Giles Yeo “RAREfest20 is a unique event that drives better science”
Dr Giles Yeo works at the University of Cambridge, studying the genetics of obesity and the mechanisms of how our brain controls food intake. While interested in the general population, Giles says information garnered from studying rare disease patients with severe...
RAREsolutions 2020: Change by Design – STEM poster Competition for young people
Young STEM stars gear up for unique rare disease poster competition. We know there are plenty of budding young designers out there who are RARING to go for RAREsolutions 2020 – a STEM-themed poster competition with a difference!
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...
