Maximising rare disease research
Rare diseases affect approximately 6% of our population and represent a significant public health concern. We are delighted to be awarded funding under this scheme to help develop our rare disease research
This small, but critically important, project aims to extend the impact of social science research within our rare disease community.
Rare diseases are a major public health concern, cumulatively affecting 6% of the population. In 2013, the UK strategy for rare disease was published, followed by the Northern Ireland rare disease implementation plan for 2015-2020. We have conducted multiple research projects in the last year focused on unmet needs for rare diseases. That research has revealed multiple areas that would benefit from improved services.
We are delighted that this award will help us generate a report that summarises information and prioritises reccomendations for action. This will also support future larger-scale funding applications for a rare disease centre.
July 2020 update with the workshop report now published: Workshop report, May 2020 for prioritizing recommendations.