Welsh Cross Party Group at Senedd
On Wednesday 18th of May, the Senedd Cross Party Group will be discussing its response to the UK strategy published in Jan 2021. It is important that HSP is the voice of Rare Diseases and a treatment strategy planned. Each of the Home nations is to produce its response to the England strategy published in 2021, so that it is clear what Scotland, Wales and Northern Ireland are planning in 2022.
Scotland are already consulting their nationals and N Ireland is to start. So now is an opportunity for the people in Wales to have a good HSP service.
It is scheduled to take place 12.00 – 13.30pm Wed 18th May. You are welcome to register to attend via Eventbrite.
In the meeting we will hear about:
- The targets of the Action Plan to improve services for people with rare, genetic and undiagnosed conditions in Wales – includes HSP
- How it will influence the rare condition landscape.
- Key barriers limiting access to diagnosis in the UK.
As some of you will not be able to attend because of other commitments, Mike Cain is intending to have a zoom meeting on Tuesday 17th at 19.00, to hear any views you wish him to express. The HSP Group is represented and at present will raise the following point;-
- Wales is developing its Genetic Services and at present they are concentrated on children and are based in Cardiff.
If you have anything to add please attend the pre zoom meeting (see Mike for details) or contact him directly via email.