Event being held in Derry to raise awareness of rare diseases and their impact on lives

February 28th saw the celebration of the 10th 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 to celebrate International Rare Disease Day with Mayor Alderman Hilary Mc Clintock, the Northern Ireland Rare Disease Partnership will go on to run a series of public events right across Northern Ireland, with the first of these scheduled to take place on 15th March at Altnagelvin Hospital, Gransha Park Seminar Room.

Fiona McLaughlin, Chair of Northern Ireland’s Rare Disease Partnership comments “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 may 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.”

Sandra Campbell, Coordinator for NIRDP in the Foyle and Northwest area adds “One of the big aims for this area is to implement cross border collaboration; luckily for us the Foyle & NW Forum is in prime position to work with our neighbours in Donegal.

Together we have already established links with "Our Children's Voice”, a lobby group for terminally ill and life limited children, many of whom are living with rare conditions. We are really keen to encourage those living within the wider Foyle and Northwest area to join us for this event and see how we can work in partnership to create real change.”

To get involved in one of these events, to discover other events in the region 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.