Rare Disease Day 2018 - Reception at the Senedd
Event Information
Description
Join Rare Disease UK for our annual Rare Disease Day reception at the Senedd.
The theme for Rare Disease Day 2018 is: 'Research', continuing on from 2017. The event will include an update on progress with implementing the Welsh Government Rare Disease Implementation Plan and the progress of the recruitment for the 100,000 Genomes Project in Wales. The event will have further information on the establishment of a Cross Party Group for Rare, Genetic and Undiagnosed Conditions. We will also have some talks from speakers affected by rare diseases who will be sharing their personal experiences during the event.
Speakers include:
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Professor Julian Sampson, Clinical Geneticist at Cardiff and Vale UHB and Lead for the 100,000 Genomes Project in Wales
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Sarah Bennett-Evans, parent of a son with Williams Syndrome
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Dr Jayne Spink, Chair Rare Disease UK
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.
Organiser Genetic Alliance UK
Organiser of Rare Disease Day 2018 - Reception at the Senedd