Lymphopoliferative Syndrome (XLP)

Northern Ireland Reception 4th March 2010 On a sunny afternoon in Belfast a wide range of stakeholders with an interest in rare diseases gathered in Stormont's Long Gallery to mark Rare Disease Day 2010. This was the first time the Day had been marked at the Assembly and there was a significant level of interest in the event. Around 120 delegates attended to raise awareness of rare diseases and there was also a good level of interest from MLAs who had come to learn more and to meet their...Read Full Story

[Edit] | By Terence Hoey on March 1, 2012 Once more the Cavan Tommy Hoey Trust Holds its Rare Diseases Day this was an open meeting to the public  both the First and Deputy Ministers of the Northern Ireland Assembly were invited but they both declined The Cavan Tommy Hoey Trust has been raising awareness in Northern Ireland for the past three years after Terry and Maureen Hoeys grandson fell sick withh two rare diseases EBVHLH and XLP since then Terry And Maureen have held rare diseases day...Read Full Story

Long attends Rare Disease Day event East Belfast MP Naomi Long has spoken at a local event marking Rare Disease Day 2012 and revealed a consultation into rare diseases has been given the greenlight by the UK health minister. The Alliance representative attended the event on Rare Disease Day (February 29) at Hynes Hall on the Holywood Road. It was hosted by local man Terry Hoey, whose grandson Cavan Tommy Hoey suffers from the uncommon condition XLP HLH. Naomi Long is patron of the...Read Full Story

The Cavan Tommy Hoey Trust (Ireland) will be taking its Rare Disease Day Road Show To Bangor Co Down Northern Ireland on the 28th April 2012 the Trust holds its rare disease day every year for the past four years but it has decided to also hold road shows to raise awareness across Northern Ireland the trust feels that awareness needs to get out into the public to help the People of Northern Ireland know and to understand about Rare Diseases and the effects it has on the family unit. The...Read Full Story

Once more the Cavan Tommy Hoey Trust Holds its Rare Diseases Day this was an open meeting to the public  both the First and Deputy Ministers of the Northern Ireland Assembly were invited but they both declined The Cavan Tommy Hoey Trust has been raising awareness in Northern Ireland for the past three years after Terry and Maureen Hoeys grandson fell sick withh two rare diseases EBVHLH and XLP since then Terry And Maureen have held rare diseases day every year since Cavan took ill.The Trust...Read Full Story