We were one of six delighted community groups across Northern Ireland celebrating a shared award of £1 million from The National Lottery this June, receiving a £112,124 share of this total fund to employ 2 part-time members of staff who will work on an outreach basis.

We have since had a very successful recruitment programme which took place in August with plans for the new project and recruits to begin in November.

The project will provide practical advice, signposting, peer support and volunteering opportunities. It will also work to improve networking, partnership engagement and seek to influence relevant policy.

Fiona McLaughlin, Chair of Northern Ireland Rare Disease Partnership comments “We are absolutely delighted to have this remarkable opportunity to provide the additional support that is so crucial to all our members. This is first for us in Northern Ireland and we are keen to ensure that this funding will make a real difference to families, carers, medical professionals and member charities as well as offering us an important opportunity to raise awareness at government level and beyond”