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.
Alastair Kent OBE, Chair of RareDisease 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]