News & Events

Rare Disease Day 2017 - Reception at the Senedd

Last Reviewed 13/01/2017

When

14/02/2017, 18:00 - 14/02/2017, 20:00

Where

The Senedd

Cardiff

CF10 4PZ

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Join Rare Disease UK for our annual Rare Disease Day reception at the Senedd.

The theme for Rare Disease Day 2017 is: 'Research brings hope to people living with a rare disease'. The event will include an update on progress with implementing the Welsh Government Rare Disease Implementation Plan as well as information about Wales joining the 100,000 Genomes Project. We will also have some talks from speakers affected by rare diseases who will be sharing their personal experiences during the event. 
 
Speakers include:
  • Alastair Kent OBE, Chair of Rare Disease UK and Director of Genetic Alliance UK 

  • Dr Graham Shortland, Medical Director for Cardiff & Vale University Health Board & Chair of the Rare Disease Implementation Group

  • Professor Julian Sampson, Director - Division of Cancer & Genetics, Cardiff University & Clinical Geneticist specialising in tuberous sclerosis complex

  • Claire Pollock, patient experience of living with Fragile X Syndrome

Canapés and light refreshments provided.

For more information, you can also contact the Genetic Alliance UK Policy & Engagement Manager (Wales), Emma Hughes - emma@geneticalliance.org.uk

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