Rare Disease UK has been campaigning for Health Departments across the UK to develop a strategy for rare diseases. The UK strategy was launched by the Dept of Health in Nov 2013. Wales is the first Nation to publish its draft implementation plan to address the recommendations within the UK Strategy, which was launched in Cardiff on Rare Disease Day 28th Feb 2014.
Genetic Alliance UK has organised a consultation event in collaboration with the Welsh Government for patients, family members and patient organisations to feed back their views on the Welsh plan at this event. Complimentary refreshments including buffet lunch will be provided. Event information :- May 14th 13.00 - 15.30 Cochrane Building University Hospital Cardiff. If you are a patient diagnosed with Vasculitis or a family member and live in Wales, you can attend this consultation. If you are unable to attend the event but would like to make a response to the consultation, see the link below. If you would like more information or to register, please contact Emma emma@geneticalliance.org.uk
Trying to connect the dots
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Merely an Accounting Problem
