Living with a rare disease? We want your views

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Have your say

The Northern Ireland Rare Disease Partnership (NIRDP) continues its series of open public meetings this week - allowing patients and carers to help shape the future of their healthcare.

Up to 100,000 people whether they are patients, carers or family members are impacted by rare disease in Northern Ireland.

Conditions include: motor neurone disease (MND), muscular dystrophy, spina bifida, Huntington’s Disease, Vasculitis, Spinal Muscular Atrophy, Lupus as well as rare forms of cancer.

In October, Northern Ireland health minister Jim Wells launched the draft Northern Ireland Rare Disease Implementation Plan for public consultation document at Stormont on the future of health provision for rare disease.

The consultation period for the document – which can be viewed at: http://www.dhsspsni.gov.uk/showconsultations?txtid=74325 - closes on January 19,2015.

Facilitated by the NIRDP, the public meetings will give people across Northern Ireland the opportunity to hear about the background and content of the draft Implementation Plan.

Whether you are a patient, a carer, a health or social care professional, or someone who works with people living with a rare disease in education, employment or any other aspect of life, these meetings give you the chance to have your voice heard.

If you are living with a rare disease, or caring for someone with a rare disease, it’s your chance to say what matters most to you and your loved ones or your colleagues.

Will the Implementation Plan help deliver better care and support? Is there an aspect of health and social care, or education, housing, employment, or transport, which could be improved?  It’s your chance to say how you think things could be improved; to point out if there is inefficiency, and to put forward ideas about how resources could be better used. 

Meetings will be held on the following dates and venues: January 12, 2015: Whinstone Suite, Antrim Civic Centre: 1pm-4pm; January 13, 2015: Lecture Theatre, Science Block A, Royal Victoria Hospital, Belfast: 4pm-7pm.