Event

14 Feb 2017
When:
Tue 14 February, 2017
Location
The Senedd, Cardiff, CF10 4PZ
Cardiff
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United Kingdom

Rare Disease Day 2017 - Reception at the Senedd 14 February 2017 The Senedd, Cardiff, CF10 4PZ, Cardiff
+442078310883
Hosted by Rare Disease UK

Join Rare Disease UK for our annual Rare Disease Day reception at the Senedd on Tuesday 14 February from 6-8pm.

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 inspirational 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 [email protected]

 

To register for this event, click here: https://www.eventbrite.co.uk/e/rare-disease-day-2017-reception-at-the-senedd-tickets-30491406618

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