Sharing news and views
Unique Feet Outdoors
Jo Balfour is a founding member and Managing Director at CRDN, who also founded the Unique Feet group. She got in touch with the Alpkit Foundation after support as they transitioned out of the long series of lockdowns. It was an incredibly important time in being able to get people back together who had been shielding for so long, looking to get the children enjoying the outdoors again and the benefits taking part in these activities brings.
Report Launch Feb 2022: Improving transitions to adult care for young people living with a rare disease
Costello Medical, Cambridge Rare Disease Network and Beacon launched a new report in March 2022 exploring the transitions process for young people living with rare conditions. In recent years, advances in the diagnosis and treatment of rare diseases have led to...
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.
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 (CRDN).
RAREsummit21: Spotlight on how we can create positive industry and patient group partnerships
Spotlight on how we can create positive industry and patient group partnershipsOn 7th October 2021, we’re holding our 5th RAREsummit – CRDN’s flagship event – bringing together more than 300 great minds in rare diseases to make connections, exchange ideas and openly...
Beyond the Diagnosis: A specially curated exhibition of portraits for the RAREsummit21 gallery
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.
‘Heartening’ support from CRDN to family: life with a rare disease for Tristan, 10
Stuck at home, alienated from the outside world? Resigned to a limited palette of social options, and a worrying sense of life slipping by without you? You couldn’t blame many rare disease sufferers – there are 3.5 million in the UK – for thinking: ‘Welcome to my world’.
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 - Inclusive designCecily 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....
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...
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...