SDLP Chairperson of the All Party Group on Rare Disease, Mark H Durkan has welcomed confirmation that Stormont buildings will light up to acknowledge Rare Disease Awareness Day for the first time in its history.
Several Council buildings including Derry City and Strabane District Council will also mark the occasion on Thursday 29th February 2024.
Said the Foyle MLA: “Rare Disease Awareness Day is a particularly special one this year, falling on the most befitting and rarest of dates – this Thursday, February 29.
“Living with a long-term health condition is extremely challenging but for 1 in 17 people across Northern Ireland affected by a rare disease, that challenge and fight to be heard can often seem insurmountable.
“I’m proud to have played my part in establishing the APG on Rare Disease alongside the Rare Disease Partnership almost two years ago.
“In doing so, we’ve given a platform to this much under-represented group. This forum has not only expanded my own understanding of rare conditions but it’s provided an insight into the lived experience of patients.
“For people diagnosed with a rare disease and their families- navigating illness in a support vacuum and facing the fear of the unknown, is a daily reality.
“Rare diseases aren’t that rare- it’s estimated that more than 110,000 people in the North are currently impacted.
“What is rare however is their access to support and treatment. I’m hopeful that the 14 step framework on rare disease will deliver tangible results for the rare disease community.
“By working with healthcare specialists, researchers and commissioners as well as patient organisations, we can ensure that no one is disadvantaged because of the rarity of their condition.
“I want to acknowledge the Northern Ireland Rare Disease Partnership for their continued efforts and the wider rare disease community for their unwavering fortitude.
“Pleased to hear that the rare disease community will receive visible recognition at Stormont and government buildings across the North this week.”
