February 28 saw the celebration of the tenth annual International Rare Disease Day, but how many have heard of this worldwide campaign, understand what it is all about, and, more importantly, know how to get involved?
Following a successful launch event in Derry City’s Guild Hall with Mayor Hilary McClintock, the Northern Ireland Rare Disease Partnership will go on to run a series of public events right across Northern Ireland, with an event scheduled to take place on March 16, from 3pm – 5pm in Portadown Care and Treatment Centre, Conference Room.
Fiona McLaughlin, Chair of Northern Ireland’s Rare Disease Partnership said, “The main objective of our events is to raise awareness of rare diseases and their impact on patients’ lives and to speak out on the issues surrounding communication; communication for patients, for careers and for health care professionals and to really highlight what the real issues are.”
Fiona goes on to add, “In Northern Ireland alone we have an estimated 100,000 people who could possibly be living with rare diseases ranging from Aagenaes syndrome, right through to Xeroderma pigmentosum and for people living with diagnoses such as these, life can often feel isolating and frightening.
“Through these events we want to reach out and engage with the general public, policy makers, public authorities, industry representatives, researchers, health professionals and anyone who wants to speak out these issues, or anyone to engage with anyone who has a genuine interest in learning more about rare diseases.”
To get involved and find out more about the work of the NIRDP, go online to register at www.nirdp.org.uk or feel free to drop by if you are in the area.
The Northern Ireland Rare Disease Partnership was set up in March 2011 as a not for profit Organisation, and a NI Registered charity, bringing together those living with a rare disease and the Organisations representing them.
The partnership work tirelessly to catalyse transformational change by working with and for people affected by a rare disease.
The NIRDP is a unique partnership of those living with a rare disease; organisations representing them health professionals; science and industry; health policy makers and academics. The membership includes people with rare conditions ranging from the very rare, Trisomy 13 mosaic, to well known conditions such as Motor Neurone Disease and Spina Bifida.