This meeting will serve as the Annual General Meeting (AGM) of the All-Party Group (APG) on Rare Disease. The agenda will include confirmation of membership, cross-community designation, and the election or confirmation of office bearers.

The meeting will also provide an opportunity to build on recent engagement with local councils and Assembly committees. Discussions will focus on ensuring the APG plays a leading role in developing the next Rare Disease Action Plan and advancing proposals for a Centre of Excellence for Rare Diseases.

Everyone is welcome to register and attend, including APG members, members of the public, representatives from statutory and public authorities, local councils, healthcare professionals, researchers, charities, MLAs, MPs, and others with an interest in improving outcomes for people living with rare diseases.

We encourage members of the Rare Disease community to contact their local MLAs using the MLA Contact Sheet and accompanying Letter Template. This is an important opportunity to invite elected representatives to help shape the future of rare disease services across Northern Ireland.

In addition, attendees will hear a presentation highlighting local and national initiatives being delivered in partnership with universities, showcasing current research, collaboration, and developments in the rare disease sector.