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!

Partnership meeting – get your voice heard!

Recently we’ve been working on a draft of our Strategic Plan, covering the five years from now until 2017. It builds on our initial work in getting the Partnership together 18 months ago, and is based on the contributions of those who were able to attend the Planning Day on 14 June. Work has been done since then to pull everything together, to set it out in a logical order, and to present it all in a way which is easy to read and follow.

What we need now is to:

  • Check that we have included the key things we want to do;
  • Check that what we have described is realistic and achievable: so (for example) if we say we will organise a Family Day in August 2013, that we are fairly confident that we can actually do this, by August 2013;
  • Commit to taking part in making it happen: we need two people for each activity, who volunteer to be responsible for leading and organising that activity; and we need volunteers for each activity, to help the team leaders and take on pieces of work, according to their available time, capacity and skills. For example, when we continue our lobbying campaign with MLA’s we will need to have small groups of Members, including patients/carers, organisational representatives, and ideally health professionals, ready to go and speak to the MLA’s; and we will need to have Members who are willing to write or speak to their own local MLA’s. Similarly, for each of the other activities!

This is your opportunity to make sure you are happy with what is in the Plan: if you have changes to suggest, please e-mail them to by 10 August.
More important, this is your chance to get your name down for the activities you want to participate in! Again, please e-mail saying what you would like to do (e.g. Help with Organising a Family Fun Day; or Lead on scoping our existing connections and thinking about how we can work with others), by 10 August.
Once we have this information, we can finalise the Plan, and get the different activities going, kicking off with our Partnership Meeting on 12 September.

Meeting for anyone interested in rare disease in NI who wants to join the partnership!

Millennium Outreach Centre
400 Springfield Road
BT12 7DU

12.15 Lunch
3pm finish

Please phone Sarah McCandless 0800 917 0222 if you’re attending, so we can count you in for food.