"Looking at the bigger picture rare diseases are not rare; 110,000 people in the North"

SDLP MLA and Chair of the recently established APG on Rare Disease, Mark H Durkan, has welcomed the launch of the Rare Disease Action Plan, a 14 step framework which would ensure individuals living with rare diseases are not disadvantaged because of the rarity of their condition.  

The high level actions that will be taken forward over the next year will include working with healthcare specialists, educators, researchers and commissioners as well as rare disease patient organisations and those personally affected by rare disease. 

The Foyle MLA said: “I am pleased to see the launch of this long overdue action plan, which will provide tangible action and results for the rare disease community.  

“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 often seems 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 the progress that this Action Plan brings and hope that in conjunction with the recently published UK Rare Disease Framework and the establishment of the APG on Rare Diseases, will help to improve the experiences of and access to treatment for people living with a rare disease. 

“I would like to pay tribute to the Northern Ireland Rare Disease Partnership for their continued involvement, they have been an integral cog in the progress of this vital action plan which will go a long way in achieving early diagnosis, effective treatment and providing patients and their families with support for their conditions which has been severely lacking. 

“I will continue to do my part as Chair of the APG on Rare Disease to ensure this underrepresented group is heard, their needs met and to raise awareness of rare conditions.”