Partnership Meeting – 17th June

A date for your diary: we will be holding a Partnership Meeting from 11.00 to 14.00 on 17th June 2014, in the Ulster Hall, 34 Bedford St, Belfast, County Antrim BT2 7FF.

Register below.

This is an opportunity to meet up again, and to hear first hand about:

  • Plans for Belfast’s first Disability Pride Day (20th September 2014) What’s it all about? How can we get involved? How can we make this a day for us all to be proud of?
  • Where are we on developing the Northern Ireland Rare Disease Implementation Plan?
  • What’s happening on getting tangible actions underway around improving rare disease care?
  • Raising Awareness of Rare Disease – what should we do next?

We are also working on how best to respond to the Draft Rare Disease Implementation Plan, when it is published, we think at the end of June, for a 12 week consultation.

Most importantly, we need to do all we can to ensure that actually implementing the Rare Disease Plan is a Ministerial Priority. So we need to make sure that all our elected representatives know how important rare diseases are; how much impact they have on people’s lives; and how much improvement could be made through implementing the Plan. Everyone can be involved in this, through talking or writing to your new Councillors; your MLA’s; your local papers about the Plan; or just by spreading the word through family and friends.

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