Patient Survey – participants needed

Patient participants needed for a survey regarding issues of access to medicines.

This survey is being conducted by a researcher at LSE – London School of Economics – as part of a study looking at problems patients have in accessing their medicines.

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Journalist interested in rare diseases

Rare Diseases UK have been contacted by Julie Cook, a freelance journalist for women’s magazines such as Bella and Women’s Own, who has an interest in rare diseases. She writes for the health pages of these magazines and is interested in doing an article on a family affected by a rare disease that they would […]

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MDS patients achieve access to vital new treatment option

NICE – National Institute for Health and Clinical Excellence – finally recommend azacitidine is available through the NHS for intermediate 2 and high-risk MDS, AML and CMML for England and Wales. The MDS UK Patient Support Group, which has been in consultation with NICE during the approval process and campaigned on behalf and in conjunction with MDS patients across the UK for almost 2 years, welcomes this announcement.

Full details in the news page.

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NICE survey – please take part

NICE, the National Institute for Health and Clinical Excellence is running a survey about their work amongst the general public – and health professionals. Please do take part – even if you are not familiar with all aspects of their activities.

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