Pa gynlluniau sydd gan Lywodraeth Cymru i ddatblygu llwybrau ar gyfer gwasanaethau arbenigol sy'n dod i'r amlwg, a meithrin ac annog gweithwyr proffesiynol sydd â diddordeb mewn clefydau prin penodol?
The Rare Disease Implementation Group (RDIG), following the publication of the UK rare disease framework in January 2021, has developed a rare disease implementation plan which is is expected to publish next week.
Within the plan there are a number of actions including the development of exemplar pathways and evaluating the pilot of the Syndrome Without A Name (SWAN) clinic. The SWAN clinic is open to paediatric or adult referrals across Wales and aims to improve the diagnostic journey, the coordination of care and access to specialist care, and increase rare disease awareness among healthcare professionals. There are no plans to pilot any further services at this time.
The aim of the plan is to improve the outcomes for all rare disease patients regardless of their condition. It is not possible to provide pathways or services for every rare condition in Wales and some people will need to access treatment at specialist centres in England.
The Welsh Health Specialised Services Committee (WHSSC) has a clear process in place for the evaluation and prioritisation of new specialised services, which is undertaken on an annual basis.
RDIG, in conjunction with WHSCC, health boards and other partner organisations, will be responsible for the prioritisation, delivery and oversight of the plan.