Open meeting to shape future for those with rare diseases


An open meeting will be held in Portadown Health Centre on Thursday, January 8 from 2-4pm to discuss the future for people with rare diseases.

It will be an opportunity to hear what is included in the NI Rare Disease Implementation Plan.

The meeting will also allow people to have their say about what matters to them - whether it’s in relation to a health or social care aspect of living or working with a rare disease or how their condition impacts on education, transport, work, or housing.

Whether you are a patient, carer, a member of health and social care staff or anyone whose work involves tackling the challenges of rare disease, this is your opportunity to shape the future.

To help with numbers for catering, register at, or alternatively just call in.

This is one in a series of open meetings across Northern Ireland on the rare disease plan.