The Northern Ireland Rare Disease Partnership (NIRDP) is holding a series of public meetings to allow patients and carers to help shape the future of their health care.
Up to 100,000 people in Northern Ireland are impacted by rare diseases such as motor neurone disease (MND), muscular dystrophy, spina bifida, Huntington’s Disease, Vasculitis, Spinal Muscular Atrophy, Lupus as well as rare forms of cancer.
And in October, 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 NIRDP, the public meetings are to 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.
The meetings are to be held at the following venues:
January 6, 2015: Lecture Theatre, Level 2, South West Acute Hospital, Enniskillen: 3.30-5.30pm
January 7, 2015: Mourne Country Hotel, 52 Belfast Road, Newry, Co Down, BT34 1TP, 7-9pm
January 8, 2015: Conference Room, Portadown Care and Treatment Centre, Portadown Health and Social Services Centre: 2-4pm,
January 12, 2015: Whinstone Suite, Antrim Civic Centre: 1-4pm
January 13, 2015: Lecture Theatre, Science Block A, Royal Victoria Hospital, Belfast: 4-7pm
A rare disease is a disease affecting 5 or fewer in 10,000 - the term covers more than 6,000 diseases, many affecting children and many genetic in origin.
In Northern Ireland alone almost 18,000 people will be affected by a rare disease at some stage in their life.
As a result, collectively rare diseases are NOT rare - over 100,000 people in Northern Ireland will be