There’s a Stormont Long Gallery event on 17 June, from 11 am to 1 pm which will give an opportunity for families, young people and children to speak to their MLAs about living with Duchenne Muscular Dystrophy.
The event, kindly sponsored by Robin Swann MLA, will raise awareness of the exciting breakthroughs in research for Duchenne Muscular Dystrophy and the need to improve pathways for trials and future treatments in the shortest time-frame possible to save lives and physical function of DMD patients. Action Duchenne is also calling for an increase in coordination of primary, secondary and tertiary services to ensure proper monitoring of the condition, which reduces expensive unplanned admissions and gives families and patients the support they need.
These are all things which apply to many rare conditions, and it would be great if as many of us “Rare Disease” folk as possible can turn up to support the event, and to reinforce the points that although each individual condition is rare, there are a lot of people affected; and that better monitoring, co ordination and planning would improve people’s lives, and save money!
The link for registration is: http://www.actionduchenne.org/NorthernIrelandlobby2013