More news on our Autumn Partnership Meeting, to be held from 10.45 to 12.30 (immediately after our AGM) in the Castleview Suite in the Pavilion at Stormont, on 27th October.
Jim Wells, MLA, Minister for Health, who will be the main speaker, will be making an important announcement about the long awaited Northern Ireland Rare Disease Implementation Plan.
Alastair Kent OBE, the Chair of the UK Rare Disease Forum, will update us on progress in England, Scotland and Wales; and Philip Watt, Chair of the Irish rare Disease Taskforce, will describe what is happening in the south.
There will be an opportunity to meet the Minister, and key officials; ask questions; and think about the key issues we need to tackle in making sure that the Vision of the UK Rare Disease Strategy – that no one is left behind just because their condition is rare – is realised in Northern Ireland.
All MLA’s and MP’s have been invited, so make sure you contact your MLA’s and MP to encourage them to come along, and show their support for this important step forward in getting rare diseases taken seriously in Northern Ireland!