Partnership meeting and AGM, 5 December

It’s time for our Annual General Meeting and partnership meeting- join us on 5 December at the Pavilion, Stormont, Belfast, BT4 3TA.


We’ll be presenting our annual report and accounts for 2016-2017, updating everyone on what we’ve been up to since, discussing the results of the survey on communications, and planning for the way ahead. And, of course, formally launching the Stronger Together project with the Big Lottery Fund!

Research teams from QUB will be helping us to consider educational priorities, and a patient passport.

We’ll start with scones and end with lunch. Will we get a cake?

We’d love you to join us- just register below so we count you in.



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!