This year’s International Rare Disease Day Theme is “Patient Voice”; and we are making our contribution through three events:
First, on Wednesday 17th February, at 12.30 to 2pm, the launch of the Foyle and North West Rare Disease Forum, which will provide support and advocacy for people with rare diseases in the Northwest. This will be held in the Dennis Desmond Boardroom, MDEC Building, Altnagelvin Hospital, Glenshane Road, Londonderry, BT47 6SB.
Dr Fiona Stewart, MBE, Consultant in Medical Genetics with the Northern Ireland Regional Genetics Service, who runs the Genetics clinic in Altnagelvin Hospital, will give the introduction; and Sandra Campbell, who is the Forum Co ordinator, will explain how we hope the Forum will help support families, and engage positively in reshaping services for those with rare conditions.
As space is limited, please email firstname.lastname@example.org if you would like to attend, or would like more information.
Second, on Monday 29 February, from 10.00 to 3.30pm, our International Rare Disease Day Conference: Patient Voice and Empowerment. This is being held in Riddel Hall, 185 Stranmillis Rd, Belfast, Antrim BT9 5EE
The morning sessions will include a presentation from a leading health policy maker on developments in Northern Ireland; and feature panel discussions, on Education, Innovation and Advocacy, led by patients, family members, and patient advocates.
The afternoon session will be an interactive Workshop, “Policy into Practice” to bring forward practicable ideas for speeding up policy implementation following the production of Northern Ireland’s Rare Disease Implementation Plan, and producing tangible wide reaching change, including developing a Virtual Centre of Expertise for Rare Disease for Northern Ireland.
Third, again on Monday 29 February, from 5pm – 7pm, Kieran McCarthy MLA is kindly hosting a Reception for NIRDP, in the Long Gallery in Parliament Buildings, Stormont, Belfast, BT4 3XX. This will give our members and MLA’s a welcome opportunity to meet, to discuss rare disease issues, to celebrate the progress that has been made in the past few years, and to look ahead, including a brief report from our Conference on enabling Patients and Families, who are “Experts by Experience” to contribute fully to the transformation process, working in partnership with policy makers and providers.
It is also our opportunity to showcase the publication of the first Report to Ministers from the UK Rare Disease Forum, the body charged by all four UK Health Ministers with monitoring progress on implementation of the UK Rare Disease Strategy. We are especially fortunate that Forum Chair, Alastair Kent OBE, Chair of RDUK, will attend our Reception, and will speak on the role of the Patient Voice in taking forward work on rare disease.