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APN 480 - 17/22: All Party Notice on Rare Diseases

A remote/virtual meeting to discuss the establishment of an All-Party Group (APG) on Rare Diseases and elect office bearers to the proposed group has been arranged to take place on Friday 11th February at 3pm using the Zoom platform.

Northern Ireland Rare Disease Partnership Charity (NIRDP) are leading a meeting to establish a Rare Disease All Party Group at the NI Assembly. Collectively, rare diseases are not rare. In NI, 1 in 17 people will be affected by a rare disease at some point in their life – that’s 110,000 people across NI.

With the release of the UK Rare Disease Framework in 2021 and the development of an NI Action Plan (designed to improve experiences of people affected by these conditions) this is a pivotal moment for the NI Rare Disease Community.

All Members are welcome to attend.

An invite will be emailed separately on request to any MLA who wishes to attend providing instructions on how to join the remote/virtual meeting.

For further information and to request the appropriate links and joining instructions for the remote/virtual meeting, please contact Rhoda Walker at chair@nirdp.org.uk.

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