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Raising awareness of rare disease in Wales

On Tuesday 23 February, the first Rare Disease UK parliamentary reception took place at the Senedd, the National Assembly for Wales. The event was sponsored by Shadow Health Minister, Darren Millar AM and attracted stakeholders from across the rare disease community including patients, carers, patient organisation representatives, health professionals, academics and industry.

Michael Hall

Darren Millar AM welcomed delegates to the event and Alastair Kent OBE, Director of Genetic Alliance UK and Chair of Rare Disease UK, informed those in attendance about our new report, ‘The Rare Reality‘. The event included presentations from speakers including Dr Andrea Edwards, Clinical Director of the All Wales Medical Genetics Service, Tony Esmond, a patient affected by the ultra rare condition Alkaptonuria and Ceri Hughes, mother of Isaac who has the ultra rare condition Moebius syndrome and has set up the photography project Same but Different to highlight the people behind rare conditions.

Alongside the photography exhibition, we had an exhibition of the Expressions of Hope art work – this project was an opportunity for those within the community of rare genetic conditions to tell their own unique story through art. Both exhibitions were extremely popular with delegates and will be travelling around Wales and other parts of the UK over the next few weeks so there will be other opportunities to view them if you couldn’t attend our first event!

Michael Hall

Our Development Officer for Wales will be exhibiting some of the photography at a stand at the Concourse in the Heath Hospital, Cardiff on the 2nd, 3rd and 4th of March so please feel free to pop along and have a chat with her there.

At the reception, Alastair also launched our Pledge for Patients campaign for Wales. The campaign involves canvassing support from prospective parliamentarians to ensure that, whoever forms the next Government, they will be committed to ensuring patients affected by rare, genetic and undiagnosed conditions get access to the right care and treatment. It has already attracted support from a number of Assembly Members who attended our Welsh reception.

We would like to extend our thanks to everyone for their support in making our Welsh Rare Disease Day Reception 2016 the best yet!

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