You are invited to an event looking at Improving access to specialised services and therapies for Welsh rare disease patients, hosted by Lindsay Whittle AM, Genetic Alliance UK and the AKU Society
When: 11.00am-2pm on Thursday 22nd January 2015
Where: Conference Room C & D The Senedd, Cardiff Bay
Lindsay Whittle a member of Plaid Cymru and an Assembly Member for the South Wales East electoral region will be speaking at the event. Geoffrey Carroll Medical Director WHSSS will also talk at the event about the role of the WHSSC and the IPFR process. A number of Welsh rare disease patients will talk about their own experiences when trying to access services.
Genetic Alliance UK will provide a light lunch and will also launch a report about access to specialised services and therapies in Wales. The report will be available to attendees at the event.
The event is an opportunity to meet with a wide range of stakeholders with an interest in rare diseases including patients and families affected by rare diseases as well as clinicians, health professionals, patient organisation representatives, researchers and industry.
Spaces are limited so registration is essential.
How to register:
To register for the event, please email eve@akusociety.org with your name, contact email, the number of people (if any) that will be accompanying you to the event and if relevant, what organisation you are attending from. Please register your details by January 15th 2015. For further information, please contact lesley@akusociety.org
Microscopic Polyangiitis
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