Annual General Meeting!

It is hard to believe, but we have been up and running as a company for 18 months, making it time for our first

Annual General Meeting,

11 September in the Ulster Hall, Belfast, from 11.00 to 11.30am

The key items of business are:

• The appointment of the Directors

A Resolution to amend our Articles to increase the number of Directors we can have from 14 to 20. This increase will allow us to build the capacity and increase the skill sets amongst our Directors and given the pace of change and all the work there is ahead this is a very necessary change.

The formal “Business” of the AGM will be followed by a normal Partnership Meeting – time to discuss what is going on, exchange views and experiences, and catch up with all that is happening, across Northern Ireland and further afield, on things which impact on all those living and working with rare diseases.

There is a very long list of interesting and important things, including for example:

• The forthcoming UK Rare Disease Plan: NIRDP are on the UK Stakeholder Group, and participating in developing that Plan
• The Northern Ireland Rare Disease Implementation Plan: The DHSSPSNI have set up a Northern Ireland Stakeholder Group, and planning will be starting in earnest very soon. We are members, and need to make sure the Implementation Plan makes a difference, in the home, in the schools, at the clinic…
• What’s happening on Transforming Your Care? Are we properly linked in to the process at the local levels?
• Planning for next year’s Rare Disease Day event in Riddell Hall, Belfast on 28 February 2014: this is going to be a real opportunity to advocate and educate about Rare Disease issues, so put the date in your diary now, and bring your ideas – we want this to be a fun and memorable day
• Planning for our Rare Disease Awareness Week, starting with a Long Gallery event on 13 January 2014. Another diary date! Who are your MLA’s; who your local papers/media contacts are; please share any ideas on how to get them involved and interested.

We have done an amazing amount in the last 2 years, thanks to the energy, commitment, knowledge, and mutual support of all the members, but we have a lot more to do! There is a wonderful opportunity over the next year to build on the foundations we have been able to lay. To do this, we need to keep up the pace- and that means using all the knowledge, skills, and experience of each and every one of our members to the best possible effect.

So please come to the AGM and Partnership Meeting; hear what is happening; say what you think; and let’s make sure that at the 2014 AGM we have a lot ofprogress to report!

4 thoughts on “Annual General Meeting!

  1. Sorry I missed the meeting on the 11th September and I was wondering when the next meeting will take place as I have a rare condition which is called Porphyria Varigate

    1. Hello Daryl,
      the next meeting is on 13 November,at 10.30, in the Northern Ireland Human Rights Commission, Temple Court, 39 North Street, Belfast BT1 1 NA; you would be very welcome!


  2. hi was just reading autumn thumb print edition and looking to find out more about your organisation as i have MND myself

    1. Hello Paul,
      Thank you very much for your interest in the NIRDP, and I am very sorry its taken me a while to respond: things have been so busy recently…
      The UK Rare Disease Strategy is due to be published this week so we are trying to get some publicity for rare conditions, and so raise awareness, around that. Then we will be working with DHSSPS and the other health authorities to develop a Northern Ireland Rare Disease Implementation Plan, which hopefully will start getting improvements for those with rare diseases, although we do have to recognise that some things may take a while to get properly planned and delivered.
      We have quite a few members with MND, and Helen Maclean, the MNDA Development Officer for NI is our Treasurer.
      The next big thing on the agenda (after the Launch of the Strategy!) is an event in the Long Gallery at Stormont on 13 January, to bring as many of the various rare conditions (including MND)
      as possible together, and to get the notice of MLA’s: there are so many things where those with a rare disease risk being overlooked or disadvantaged, just because no one has heard of their condition- yet overall over 100,000 people in NI will be affected by a rare disease, so its not a minor issue!
      It would be great if you could come along on Jan 13th (and after that our next event is the Rare Disease Day event, in the Riddell Hall, Belfast, on 28 February); even if you can’t come, perhaps you could writ to your MLA and tell them the event is on, and encourage them to be there?

      Please keep in touch- we are much stronger and more effective when we work together constructively on the problems..


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