The Planning Day: Update

This is just to tell everyone about how our Planning Day went, and what the next steps will be.  First, we followed the “Duck” signs from the M1 J 10 to the Discovery Centre at Oxford Island, and ran a gauntlet of ducks and moorhen chicks to get into the Discovery Centre…

Grace Henry laid out the agenda for the day- starting with a “getting to know you” session- so guess who has volunteered for 6 different overseas charities? And who has played for the Ulster Youth Orchestra?  (As this is a food centred report, there are no prizes for guessing who’s on a diet!)

Then we got down to serious work, looking at what we have achieved already, what our vision and values are for the Partnership, and most importantly, (after a well deserved lunch break- yummy sarnies!) exactly how and when we are going to go about carrying out our core role of Advocating, Educating and Innovating in support of those affected by a rare disease, and their families, dependants and all those caring for them.

There were lots of ideas and plenty of enthusiasm and determination- all recorded on flip charts and pieces of paper. We ended up with two walls of the room covered with our thoughts and comments!

Now What?

Key areas we identified for action include:

  • advocating and lobbying on rare disease issues;
  • developing education modules for health and social care professionals
  • using IT effectively;
  • supporting families; and
  • developing the Partnership itself.

Grace is collating all this, and the draft output will be sent round all NIRDP members for comments.  The Board will look at the draft at the next meeting on 27 June; but we will need to have a special Board meeting to agree the final Strategic Plan and Operational Plan, taking account of comments from members.

Please watch out for the draft plan, and get your views and comments heard by emailing your thoughts to

We are also planning for another Partnership Get Together – probably in September – to get the work off to a good start: the date, venue etc will be posted here on the website shortly.