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NICE has put forward key changes to the way they assess medicines and treatments, which should…
Blog
We were pleased to have so many of our Northern Ireland community attend and hearing all the…
News
We were joined by Prof Mary Reilly (Professor of clinical Neurology at UCL) who spoke about the…
News
At the moment, services are funded differently depending on where in England you are. Some services…
Blog
In July 2021, we published the 'Shining a Light: the impact of COVID-19 and the future of care for…
News
Spinraza
The first treatment for spinal muscular atrophy (SMA), Spinraza is now available to…
News
To mark Becker awareness week, we were joined in our BMD seminar by researcher Federica Montanaro,…
News
To mark LGMD awareness day, we were joined in our LGMD seminar by researchers Volker Straub and…
Blog
Led by Public Policy Projects and Genetic Alliance UK, the Rare Disease Coalition held four…
News
To mark Mitochondrial Awareness Week 2021 (19-25 September), we were joined in our mitochondrial…