Afternoon Tea with the Childhood Tumour Trust
Want to learn more about Neurofibromatosis Type 1, with a focus on diagnosis and care? Come along to Danesfield House at 1.30pm on Friday 6th August for Afternoon Tea with […]
rare disease
Public Dialogue on Whole Genome Sequencing for Newborn Screening
An online event to find out about a nationwide public dialogue on the implications of using whole genome sequencing for newborn screening. One hundred and thirty members of the public […]
RAREsummit21
Hear from and engage with a range of stakeholders pioneering change across the rare disease landscape… CRDN‘s RAREsummit21 is a platform for change. It is the infrastructure that unites patients, […]
Reflections on rare diseases: state of the nation 2021
Starting a conversation Back in 2019, Baroness Blackwood spoke at the British Paediatric Surveillance Unit (BPSU) rare disease summer tea party where she stated “we need national debate on rare […]
The Unusual Suspects: rare disease in everyday medicine
emotive Reviews ‘The Unusual Suspects’ M4RD has continued to work closely with emotive – an independent, award winning global healthcare communications agency. Emotive were greatly involved in helping us bring […]
Mystery Disease Monday is back #MDM
You spoke and we listened!! We are pleased to announce that Mystery Disease Monday will be back from Monday 17th May and to mark the start of National Eosinophilic Awareness […]
Precision Medicine & Rare Disease
If you work in rare diseases or rare disorders, this conference is one you cannot miss. Come and hear talks and discussions by leaders in academia, biotech, pharmaceuticals, diagnostics, clinical […]
Making the Unseen Seen: Rare disease and the lessons learned from the COVID-19 pandemic
At the beginning of the COVID-19 pandemic of early 2020, a group of concerned advocates came together to take Action for Rare Disease Empowerment. The group became known as ARDEnt […]
Mobilising pathways to accommodate new transformative treatments – using CF as a case study
Join OPEN HEALTH for a live webinar exploring the journey of RARE pathway transformation and the introduction of disease-modifying treatments as part of their Rare Thoughts and Outcomes series. Learn […]
The Unusual Suspects 2020 – Rare diseases in everyday medicine
In February 2020, a month before lockdown in the UK, we held our annual symposium at The Royal Society of Medicine for the sixth year. ‘The Unusual Suspects: Rare diseases […]