Genetic Alliance UK works in collaboration with and on behalf of its members across the UK to support high level change to improve the lives of people living with rare, genetic and undiagnosed conditions.
2024
Stats Behind the Stories
Statistics are simple and memorable. For Rare Disease Day 2024, our campaign focused on raising awareness of statistics among the public and healthcare professionals, and sharing some of the stories behind the statistics.
However, for our Rare Disease Day policy report we turned this approach on its head and explored the statistics behind the stories. As Rebecca Middleton, CEO and Founder of Hereditary Brain Aneurysm Support says: ‘It’s often said in the rare disease world that if you can’t be counted, then you don’t count. And of course, counting data is counting people. Each data point has a person and a powerful story behind it.’
Stats behind the stories
2023
Coordinating Care: Learning from the experience of people living with rare conditions
For Rare Disease Day 2023 we launched our report highlighting a series of examples where individuals were experiencing good care coordination from the perspectives of those living with rare conditions and the healthcare professionals providing the services. The report also has examples of how not having effective coordination of care can negatively impact a person’s quality of care.
The Coordinating Care report was informed by the CoOrdinated Care of Rare Diseases (CONCORD) research study, which is summarised in an animation and illustration (2023)
Coordinating Care report
Managed Access Agreements: Shared Learning Roundtable
We brought together a group of our members who have varying levels of experience relating to managed access agreements (MAA) to share learnings from one another. Through discussions three key themes arose that led to a series of recommendations for NICE and NHS England to improve the experiences of patient involvement in MAAs.
Managed Access Agreements: Shared Learning Roundtable
Advanced Therapeutic Medicinal Products (ATMP) Equity of Access
Through the work we do with ATMP Engage, a collaborative group working on improving patient and public involvement and engagement in the development of ATMPs, we carried out research and brought together a roundtable of experts to discuss challenges and potential solutions to ensure access to these unique therapies is equitable.
Advanced Therapeutic Medicinal Products (ATMP) Equity of Access
Cell and Gene Therapy Magazine
An educational magazine that explains what cell and gene therapies are and why some rare or genetic conditions may be better suited to these therapies compared to others. It also addresses some of the common questions we are asked by the rare disease community.
