We’re delighted to announce on NIRDP’s 10th anniversary that an All-Party Group (APG) for Rare Disease has been established at the NI Assembly.
This is all down to you, the NI Rare Disease Community who gave your support to the NIRDP ‘Fair for Rare Campaign’ which resulted in hundreds of letters being sent to all the NI MLA’s urging them to help us set up this important APG.
We would like to introduce the All Party Group Officers:
Chairperson: Mark H Durkan MLA
Vice Chairperson: Maolíosa McHugh MLA
Secretary: Paula Bradshaw MLA
Treasurer: Deborah Erskine MLA
Thanks to the APG Officers and to all the MLAs who have offered their support to this cross party voice at the NI Assembly. We look forward to updating you on the work of the APG in the coming months.
Northern Ireland Rare Disease Partnership are pleased to share that the first meeting of the All-Party Group (APG) for Rare Disease was held on Monday October 10th in Parliament Buildings.
The Rare Disease APG function is to provide a much-needed voice at the NI Assembly for this much under-represented group, raising issues affecting the community and additionally increase awareness of rare conditions within the NI Assembly.
At this first meeting an endorsement of the newly formed APG was read from Health Minister Robin Swann by Chair Mark H Durkan MLA. In the endorsement Minister Swann said “This is a much needed forum to give a voice to our rare disease community at the Northern Ireland Assembly, and to promote the needs of people living with rare conditions and their families”.
Patrick Toland CEO followed the endorsement by giving a short overview of the NI Rare Disease (RD) Action Plan which was referred to in Minister Swanns letter for the benefit of the MLAs in attendance.
External Guest speakers at the meeting were Anne Marie O’Loan a parent of twin daughters with PKU (Phenylketuniria) and Miriam Martin, Chair of the voluntary rare disease support organisation SACA.
Anne Marie shared how she spends every day caring for young daughters with PKU to protect them from harm by following a harsh and severely restrictive diet for life. In particular Anne Marie shared her campaign for her children and others in Northern Ireland for access to a life transforming drug which has been licenced in the UK since August 2021.
Miriam and her voluntary group SACA, which supports people affected by Syringomyelia or a Chiari Malformation – rare/uncommon long term neurological conditions, wanted to highlight to the APG members that the ‘Cost of Living’ Crisis is having a major impact on the rare disease community.
Miriam shared a statement from a member Susan Mathews who is for the most part housebound which very clearly explained the difficult choices members of the rare disease community are facing and how it is difficult to know where to look for information and help locally as well as who to turn to for advice on Energy.
The MLAs in attendance were very engaged and agreed the APG would be a very positive vehicle where all parties would work together at the APG to highlight the issues shared at the meeting to support the rare disease community.
At future meetings it was agreed: to ‘Spotlight’ an individual rare condition to help the MLAs gain an understanding of what is like to live with a rare condition; to ‘Spotlight’ current issues affecting the rare disease community; and to provide updates on the DOH led NI Rare Disease Action Plan.
NIRDP provide the Secretariat for the All-Party Group on Rare Disease and if you would like to raise an issue for consideration at the next meeting please contact:
Edel Rogan on email engage@nirdp.org.uk
Membership: All Party Group on Rare Disease details (niassembly.gov.uk)
To learn more: All Party Groups (niassembly.gov.uk)