Some of us will be online to Senedd, Holyrood and Westminster in a virtual reception (replacing the previous physical events). The British Rare Disease Strategy has already been produced and yet has to be ratified by the parliaments of Wales, Scotland and N Ireland.
If you have any questions that you would like us to ask, or any points that you want to raise about HSP, please message me by Sunday 20 Feb.
I haven’t yet had the plans for N Ireland but if there are any points please email me.
Mike Cain
Trustee
