Rare disease patient registries

Rare disease patient registries

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Rare disease patient registries workshop Our last workshop of 2016 explored the importance of patient registries and how patient groups can support them. Rare diseases pose great challenges for research, primarily because each condition affects so few people. Patients...
Working with researchers

Working with researchers

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Working with researchers workshop Our third workshop of 2016 introduced patient groups to the ways they can work with researchers. The ultimate aim of rare disease patient groups and charities is to find a cure for their conditions. Research holds the key for the...
Sustainable development for rare disease charities

Sustainable development for rare disease charities

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Sustainable development for rare disease charities workshop Our second workshop of 2016 introduced how patient groups can sustainably grow their charities. In the rare disease field, patient groups play a crucial role in supporting patients and motivating research...
Navigating the Highly Specialised Technologies programme

Navigating the Highly Specialised Technologies programme

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Navigating the Highly Specialised Technologies (HST) programme workshop Our first workshop of 2016 explored NICE’s Highly Specialised Technologies (HST) programme, focusing on the role rare disease patient groups can play. The number of treatments (orphan drugs)...