Rare Disease Day Northern Ireland 2010

Northern Ireland Rare Disease Day was held on the 26th February 2010 it was sponsored by Belfast Lord Mayor Councillor Naomi  Long MLA Victoria Electoral area, it was organised by The Cavan Tommy Hoey Trust Ireland, this was Northern Ireland first Rare Disease Day and thanks to the Belfast Lord Mayor it took place at the Belfast City Hall. The Cavan Tommy Hoey Trust were delighted the Lord Mayor Sponsored this event, as over the years she has worked very hard as Councillor and MLA for the Victoria Electoral area,  she has proven to many people, she represents all the people with her hard work and the devotion to her electorate.The Cavan Tommy Hoey Trust was set up by Cavans Grand Parents Terry and Maureen Hoey after they saw their little grandson in Bristol Childrens Hospital with two life threatening diseases known as XLP,EBVHLH,

Rare Disease Day will be an annual event that will take place in Northern Ireland, The Cavan Tommy Hoey Trust hope to forge links with the south of Ireland to enable them to put on much larger events in the future to raise awareness of rare diseases. The Cavan Tommy Hoey Trust would also like to express thanks to Rare Disease UK Stephen Nutt and Melissa Hillier for attending the event,also thank you to Melissa for speaking on behalf of Rare Disease Uk. they also wish to thank Disability Actions Mr Colin Harper for attending and making a speech on behalf of Disability Action .

while Cavan was at Bristol Childrens Hospital he was cared for by his consultant Mr. Colin Steward, Cavan's Grand Parents would like to say a big thank you to him for the dedication he and his medical team showed when Cavan was a very sick little boy, without his dedication their little grandson may not be here today. They have also seen at first hand the work CLICsargent does at times like this and how they work so hard in the back ground to help families like Cavans, at their time of need they showed  just how important it was to have a bed to go home to and be able to be with your child at the same time, they are there when you need them even if it is just to talk to, they provide a room and a bed for as long as is needed, all the basic things like cooking and laundry facilities are there, kindness and care like this can be very hard to find and thankfully our family did. That is why it was so important that CLICsargent was ask to attend Northern Ireland Rare Disease Day. 

Belfast has never held a rare disease day before it was a learning curve for us all and we are sure each time it takes place the easier it will become. we were very glad to have Doctor Fiona Stewart from the Belfast City Hospital Genitics Department at the rare disease day as she was able to let us have an insight into what is going on regarding rare diseases in Northern Ireland,we would like to thank her for all the work and dedication. 

The Cavan Tommy Hoey Trust would also like to thank George Best Belfast City Airport for the support they have given Cavan,and the special day they gave Cavan at the airport something he will never forget, also the Fire Crew and the watch tower crew for taking the time they did to show Cavan such a good time.The Cavan Tommy Hoey Trust is very grateful to all the staff of Belfast City Airport in showing their support for Northern Ireland Rare Disease Day. The Cavan Tommy Hoey Trust sends special thanks to Mr Brian Ambrose, Michelle Hatfield ,Ruth Kimberley and Stephen Patton,