Last Friday, over 80 patients, families, patient organisations and health professionals gathered for…
The first meeting of the Welsh Rare Disease Implementation Group was held last week. The group is responsible for oversight of the Welsh Implementation Plan for Rare Diseases.
Those in attendance discussed the progress being made, by the responsible stakeholders, towards the commitments in the plan to date. We also discussed the priorities for Local Health Boards to focus on and to input into their Integrated Medium Term Plans for next year.
Local Health Boards will be brought together at a workshop in October to ensure that there is a coordinated approach to priority setting within each of their plans. One recommendation within the plan was to hold an annual event where Local Health Boards would be required to report on progress with implementation.
This event will be held on Rare Disease Day 2016 (Monday 29 February 2016) during the afternoon at the All Nations Centre, Cardiff. The event will be open to the public and we hope that members of Genetic Alliance UK will make their local representatives aware of this meeting as it will be a great opportunity for the patient community to hold Local Health Boards in Wales to account.
For more information about this event, and others in Wales, please contact our Development Officer in Wales, Emma.