“Rare conditions” are chronic, debilitating, life threatening conditions, affecting fewer than one in 2,000 people.
In Northern Ireland, one person in every 17 will be affected by a rare condition at some point in their life. This is the equivalent of over 100,000 people.
Northern Ireland Rare Disease Partnership (NIRDP) is a not for profit organisation and registered NI charity that work to bring about change for those with rare or difficult to diagnose conditions.
The charity is running their first national campaign, RariTea, from February 21 - March 7, which coincides with International Rare Disease Day (February 28) and are asking everyone to get involved in helping create real change for those affected by rare conditions across NI.
Rhoda Walker, Chair of the Partnership, said: “Our campaign is based on the popular coffee morning model, except that in Northern Ireland we do love a wee cup of tea, hence, our focus is on having a cuppa together!
“We are asking for individuals, organisations, businesses and groups to support a tea event with friends and colleagues; this might be an afternoon tea, a tea party or simply sharing a cuppa with a few friends.
“Even the smallest of efforts can go a long way towards helping us raise awareness of our charity and the work that we do, and will aid us in reaching more families, carers and patients across the region who need our support.”
NIRDP are joining forces with Coleraine-based ‘Infuse Artisan Teas’ to help bring people together over a cuppa to find out about rare conditions, to share some quality time, and to have some fun.
If groups would like to make a donation this can be arranged via the website, www.nirdp.org.uk, or by contacting firstname.lastname@example.org for details.