Belfast Rare Disease Day Faces A Brick Wall Finding Venues For 2011 Event

Northern Ireland organizer for rare disease day The Cavan Tommy Hoey Trust (Ireland) has run up against nothing but brick walls this year trying to find a venue to hold the second Northern Ireland rare disease day on the 28th February 2011. The trust had contacted the Belfast City Hall in November 2009 to ask the Right Honourable Lord Mayor Pat Convery to sponsor the event on behalf of the community of Northern Ireland, unfortunately he was unable to let us have a venue at The City Hall, the Trust was contacted by Chris Lyttle of the East Belfast Alliance Party to say he would try and sponsor the event for us at the Northern Ireland Assembly, when Chris contacted us it was like an answer to our prayers, but he also could not get the venue.The Alliance Party has always been a supporter of The Cavan Tommy Hoey Trust and we are very pleased to have last years Lord Mayor The Honourable Councillor Naomi Long East Belfast Member of Parliament and Patron of The Cavan Tommy Hoey Trust the trust looks on the 28th February 2011 as one of the most important day in its diary, just as the rest of the world holds Rare Disease Day,  it is a day when patients and their famlies all over the world remember and unite to raise awareness of the nightmare of  rare diseases and the impact it has on the family unit.Northern Ireland held its first ever event last year it was held at the Belfast City Hall on th 26th as the 28th was a sunday. The Cavan Tommy Hoey Trust was set up by the grand parents of little CavanTommy Hoey, after their little grandson was diagnosed with XLP only 100 Famlies in the world has the gene, he was also diagnosed with EBVHLH,another Rare Disease on returning from Bristols Children Teaching Hospital Terry and Maureen Hoey decided to set up the Trust, they also  contacted MLAs, hospitals and doctors to see if they had heard of Rare Diseases and to see just what was at hand for the children of Northern Ireland, also to see if our medical service could cope and diagnose Rare Diseases. The outcome was shocking no one had heard of Rare Diseases or how to diagnose them. Terry and Maureen contacted  the First Minster and the Deputy First Minister to Alert them of the position, they also alerted the Chief Medical Officer of Northern Ireland regarding XLPand EBVHLH .Terry and Maureen then set  up The Cavan Tommy Hoey Trust to try to raise awareness to the media, news and television, also setting up Blog sites all over the net to attempt to get information out regarding Rare Diseases.They both found it very hard work as both Terry and Maureen are ill themselves and trying to raise funds for the Trust is not an easy job, but they know only to well just what the effects are on all the family when something like this comes to your door, you will never know until you are walking in the shoes of a family that has Rare Disease. Terry and Maureen agreed they would raise funds for Cavan and for the Children in Northern Ireland as the need is great they have worked night and day even when news regarding Cavan was not good, they worked to get collection boxes into shops to raise funds to help with the fight against Rare Disease even though they had many doors closed in their face they had to keep going and explaining to everone they came in contact with about the nightmare of Rare Disease. Rare Disease Day was the cherry on the cake at last Terry and Maureen had been able to get the profile of rare disease out there, they contacted every single person in our Northern Ireland Parties and every high ranking person in the local goverment departments and leaders of local business community making sure that everyone knew of the nightmare of rare diseases and its effect on famlies, and inviting them to rare disease day at the Belfast City Hall, It was then we were contacted by UK Rare Disease asking us to hold a joint event as they were also holding an event at the Northern Ireland Assembly, The Cavan Tommy Hoey Trust ask Debbie Hoey Cavan's Mum and Cavan to attend both events, Terry and Maureen felt it would be a great platform for famlies and patients to meet and to show that Northern Ireland Cares about rare diseases.The Cavan Tommy Hoey Trust was shocked to hear that the event being planned by the assembly this year on the 3rd of March 2011 and sponsored by Sinn Fein. They did not make any sort of contact with The Cavan Tommy Hoey Trust  you only have to google The Cavan Tommy Hoey Trust to see just what time has been spent raising the profile of Rare Disease and the work the Trust has undertaken in the last year.Terry and Maureen look on this as a great snub to The Cavan Tommy Hoey Trust and to the patients and famlies that are going through the nightmare of Rare Diseases, and a snub to all the hard work that has been carried out by The Cavan Tommy Hoey Trust not to involve them in the planning of the reception for UK Rare Disease, and  to ignore  a Northern Ireland Patient Group. We are very pleased that the profile is again being raised at a high level but its just not about the nice things like coffee and tea its about the children who are fighting Rare Diseases in our wards all over the UK and Ireland, some children in hospital for weeks on end and famlies waitng on a diagnosis of a disease that man has never found a cure for, or tell the life term of the child with Rare Disease, it is only Patient groups that can tell just what is needed, Rare Disease is not waiting on meetings or receptions, Rare Disease is happening now and it is effecting our children, if The Cavan Tommy Hoey Trust  is to outspoken for some people so be it. Children like Cavan need a voice and need all the support they can get no matter where it comes from. Rare Diseases have no borders Rare Diseases is not so Rare Please Support The Cavan Tommy Hoey Trust and Belfast Rare Disease Day On the 28 February 2011

Terry Hoey
President  The Cavan Tommy Hoey Trust
86 Palmerston Road
Sydenham
Belfast
Northern Ireland
Co Antrim
email thetrustees@the-cavan-tommy-hoey-trust.org.uk