Killough woman helps run tea party in aid of rare health conditions

Killough woman helps run tea party in aid of rare health conditions

20 February 2019

A KILLOUGH woman will be co-hosting a tea party with a Newcastle hotel to launch a province-wide campaign to help raise awareness for those affected by rare conditions. 

The Burrendale Hotel will be supporting Julie Powers launch RariTea, which begins tomorrow and is in aid of Northern Ireland Rare Disease Partnership. 

Julie says rare conditions can be chronic, debilitating and life-threatening conditions.

In Northern Ireland it is estimated over 100,000 people are affected by such conditions. A survey in 2011 revealed that one-third of patients wait up to five years for an accurate diagnosis with almost half receiving a wrong diagnosis initially. 

Northern Ireland Rare Disease Partnership (NIRDP), is a not-for-profit organisation and registered charity working to bring about change for those with rare or difficult to diagnose conditions.

RariTea, which runs until March 7, is aimed at helping to raise awareness of rare conditions and their impact.

Julie is inviting everyone to join her and others affected by rare disease in learning more about rare conditions over a “cuppa and cake”.

“We are running our campaign for two weeks. We would continue to ask individuals, organisations, businesses and groups to support a RariTea event with friends and colleagues. “This might be an afternoon tea, a tea party or simply sharing a cuppa with friends.

She added: “Even the smallest of efforts can go a long way towards helping us raise awareness of our charity and the work we do, and will aid us in reaching more families, carers and patients across the region who need our support.”

Fiona O’Hare, Marketing Manager of the Burrendale Hotel, said: “We were delighted to have the opportunity to get involved in helping create real change for those affected by rare conditions across NI. 

“I was shocked to discover that as many as one in every 17 people in Northern Ireland will be affected by rare conditions at some stage in their life. Rare conditions are not as rare as we might think.”

Rhoda Walker, chair of the Partnership said: “We are so grateful to the Burrendale Hotel for getting involved in our campaign and for helping us to raise awareness right across Northern Ireland.”

Anyone wishing to make a donation, or wanting to know more about the event, can contact www.nirdp.org.uk, or info@nirdp.org.uk. All donations will go directly towards funding a full-time co-ordinator who will help families and patients affected by rare conditions access help and support.