Attend the Welsh Parliament Cross Party Group meeting on Rare, Genetic and Undiagnosed Conditions on 26 January, 11.00-12.30 via Zoom. The topic of discussion will be on getting a faster diagnosis and care coordination for rare conditions.
Register to attend by emailing contactus@geneticalliance.org.uk
- Speakers:
Russell George MS, Chair of the Wales CPG on Rare, Genetic and Undiagnosed Conditions - Martin – Giving his experience of diagnosis as a parent of a child with a rare condition
- Amy Simpson – Representative from the CONCORD study to draw on both diagnosis and care coordination
- Michelle Conway – To discuss the survey conducted by Rare Disease Nurse Network on care coordination
- Dr Graham Shortland– lead on the SWAN clinic project discussing plans for the SWAN clinics and how they work
