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Rare disease public meetings will help shape the future of healthcare in Northern Ireland

If you are one of the 100,000 people in Northern Ireland living with MND, Lupus and range of other conditions the Northern Ireland Rare Disease Partnership (NIRDP) wants to hear from you

By Amanda Ferguson

The Northern Ireland Rare Disease Partnership (NIRDP) is hosting a series of public meetings to help shape the future of healthcare here.

The first in a series of meetings will take place on Wednesday, December 17 at Gransha Hospital in Londonderry.

NIRDP is keen to hear from those with conditions such as motor neurone disease (MND), muscular dystrophy, spina bifida, Huntington’s Disease, Vasculitis, Spinal Muscular Atrophy, Lupus and rare forms of cancer.

In October, Stormont health minister Jim Wells launched a public consultation on the draft Northern Ireland Rare Disease Implementation Plan.

It closes on January 19, 2015. View it here: http://www.dhsspsni.gov.uk/showconsultations?txtid=74325

Upcoming public meetings:

December 17, 2014:  Old Board Room, Gransha Hospital, Derry: 1pm-4pm

January 6, 2015: Lecture Theatre, Level 2, South West Acute Hospital, Enniskillen: 3.30pm-5.30pm

January 8, 2015: Conference Room, Portadown Care and Treatment Centre: 2pm-4pm

January 12, 2015: Whinstone Suite, Antrim Civic Forum: 1pm-4pm

January 13, 2015: Lecture Theatre, Science Block A, Royal Victoria Hospital, Belfast: 4pm-7pm

A spokeswoman for NIRDP said: "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."

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