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"Working together we can secure the best use of scarce expertise and resources, maximising the health gain for all those with rare conditions" Alastair Kent OBE, Chair of RDUK


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Rare Disease Day 2011

February 28th 2011 marked the 4th international Rare Disease Day. This annual event aims to raise awareness of rare diseases, bring together all those with an interest in the field, and highlight rare diseases as a health priority to the country’s government and health departments.

The theme for this year was ‘Rare but Equal’ emphasising the right for rare disease patients to have equal access to diagnosis, services, information and support as those affected by more common conditions. It highlighted the gaps that currently exist in healthcare provision for rare disease patients and the need for these patients to have the same quality of care as any other patients.

Rare Disease Day has continued to grow since the first event held in 2008, and this year patient organisations and rare disease alliances in over 40 countries marked the event.

Rare Disease UK were pleased to mark this year’s event with parliamentary receptions in each of the four home nations. This year also had a special focus for RDUK as it marked the launch of our report Improving Lives, Optimising Resources: A Vision for the UK Rare Disease Strategy. This report is the culmination of 18 months of work so we were very excited to see it finally officially launched!

These receptions provided guests from the rare disease community the opportunity to meet with their elected representatives to educate them on the issues associated with rare diseases, and the changes that need to be made to improve the experiences of those living with, or working in the field of, rare diseases.

We were pleased to get a good amount of media coverage surrounding this year’s events. This included articles in both national and local newspapers, and interviews on national and local radio.

RDUK would like to thank everyone that hosted, spoke at or attended our events, as well as all our members who carried out their own awareness-raising activities and made helped make Rare Disease Day 2011 such a success.

For further details on each of our events, please click on the following links:

Westminster Reception

Scottish Parliamentary Reception

Welsh Assembly Reception

Northen Ireland Assembly Reception

To see some of the media attention that we gained from Rare Disease Day, please click here.