‘Improved support needed for people living with rare diseases’

THE SDLP Chair of the APG on Muscular Dystrophy, Mark H Durkan says he is working on the establishment of an All Party Group on Rare Disease to ensure individuals living with rare diseases are not disadvantaged because of the rarity of their condition.

He was speaking after a meeting with the Northern Ireland Rare Disease Partnership Charity.

Said the Foyle MLA: “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 can appear insurmountable.

“For individuals diagnosed with a rare disease, their carers and their families, navigating conditions with very limited support and facing the fear of the unknown, is a daily reality.

“Looking at the bigger picture rare diseases are not rare- 110,000 people in the North will be impacted by one at some stage in their life.

“What is rare however is available support networks and educational resources for these individuals.

“I welcome that progress is happening slowly but surely with the release of the UK Rare Disease Framework in 2021 and the development of an NI action plan to raise awareness of rare disease and improve the experiences of people living with related conditions.

“However, it is crucial that this under-represented group have a forum whereby their voices can be heard.

“The establishment of an All Party Group on Rare Disease would provide that space; creating awareness and instigating essential reform to ensure people living with rare diseases can access an improved framework of support and treatment.”

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