An event welcoming members of the community living with rare diseases is being held in Armagh this month.
The Rare Disease Day event is being hosted on February 19 in Dobbin Street, Community Hall. Running from 11am-1pm, the event is free and opened to anyone in the area who lives with a rare condition or offers support for anyone dealing with a condition. The City centre location offers on-site parking and accessible entrances available.
On the day, event goers can expect activities for children, refreshments, specialist support and advice.
Hosted by the ‘Power of Connection’ group in association with Rare Disease Partnership [the parent group], the event is hosted in different locations throughout Northern Ireland including Belfast, Derry, Omagh and Armagh.
Rosemary Coade-Arbuthnot, one of the directors of Northern Ireland Rare Disease Partnership, founded the group after her husband Michael was diagnosed in 2004 with a rare neurological condition known as Multiple System Atrophy (MSA).
“Over 110,000 people in Northern Ireland are living with a rare condition, and the list keeps growing because there is constantly new conditions coming home and it’s hard to get a diagnosis.
“When Michael was first diagnosed, there where no support groups available and with his condition being so rare, there was also no consultant or nurse aware of MSA. After Michael’s diagnosis, we where sent home and nobody had heard of this illness. I didn’t know where to turn too there was no groups available at that time.
“So now with the Power of Connection groups, we can help others with guidance and information to help with diagnosis and referral on where to go so people don’t feel so alone.”
For more information, click here to visit their Facebook page.
