Welsh Assembly, Cardiff - Tuesday 23rd February, 6pm - 8pm
Date and time
Location
National Assembly for Wales
The Senedd Cardiff CF99 1NA United KingdomDescription
To mark international Rare Disease Day, Rare Disease UK will be hosting Parliamentary Receptions across the UK.
Our reception in Wales, hosted by Darren Millar AM the Shadow Minister for Health and Social Services, will be taking place in the Welsh Assembly (The Senedd) on Tuesday 23rd February between 6pm and 8pm.
Speakers include:
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Alastair Kent OBE, Chair of Rare Disease UK and Director of Genetic Alliance UK
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Dr Andrea Edwards, Clinical Director of the All Wales Medical Genetics Service
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Ceri Hughes, Parent of Isaac who has the rare condition Moebius Syndrome
We will also have an exhibition with the work of one of our speakers, Ceri Hughes who runs 'The Rare Project'.
Rare Disease Day provides the rare disease community across the world with the opportunity to increase awareness of rare diseases and highlight this public health priority to government and health departments. It is recognised in countries all around the world and 2016 marks the ninth year that the international rare disease community celebrates Rare Disease Day.
Organised by
Genetic Alliance UK works with organisations and individuals to ensure that the needs and preferences of all people affected by genetic, rare and undiagnosed conditions are recognised, understood and met.