NI Rare Disease Partnership to host first awareness events in Derry

Rare conditions are chronic, debilitating, life threatening conditions, affecting fewer than one in 2,000 people. There are more than 7,000 such conditions, and more are being defined every year.

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; a population the size of Derry and a community larger than that affected by AIDS and cancer combined.

NI Rare Disease Partnership 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, which runs from February 21 to March 7, and which coincides with International Rare Disease Dayon February 28.

The Partnership are asking everyone to get involved in helping create real change for those affected by rare conditions across NI.

There are two events happening in Derry city where everyone is encouraged to drop in, buy a cuppa and join in the conversation to help raise awareness.

The first event will be taking place this Friday, February 22, from 12-4pm in Patricia’s Coffee House, Atlantic Quay.
The second takes place on Tuesday, March 5, from 11am to 3pm in Café Nero, Crescent Link Retail Park.

Rhoda Walker, chair of the Partnership says: “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 is joining forces with Coleraine-based ‘Infuse Artisan Teas’ to help bring people together over a cuppa to find out about rare conditions. If you can’t make the local events, there are still many ways to get involved and by posting your images and comments of support via social media, tagging @NI_RDP and using the hashtag #RariTea you can help NIRDP increase it’s reach.

If groups would like to make a donation this can be arranged via the website, www.nirdp.org.uk, or by contacting [email protected] for more details.

All donations will go directly towards fundraising for a full time Coordinator who will help families and patients affected by rare conditions access the help and support that they need.