The Ultra Rare disease Disorders and Disabilities Foundation is a charity that is striving to raise awareness of the cost of drugs for raredisease/ultra,rare disease it is set up in Northern Ireland the charity number is NIC102130 the HMRC number 00089 the charity has been set up by the grandparents of Cavan Tommy Hoey he has (XLP) (HLH) it has been working and researching into rare/ultra,raredisease for the past 12 years when Cavan became ill they started trawling web sites to try and find out what XLP HLH was without much luck they decided then they would have to raise awareness of rare and ultra rare diseases.
They set up The Cavan Tommy Hoey Trust and they held the first ever rare disease day in the Belfast City Hall on the 28th February 2007 the first day that Northern Ireland woke up to rare disease since then they both have been working tirelessly into researching into rare/ultra,rare diseases they then set up The Ultra Rare Disease Disorders and Disabilities Foundation (urddad-foundation) even though Terence Hoey Co Founder had suffered kidney failure in 5th Dec 2010 he still worked day and night setting up the Foundation.Bringing down the cost of drugs to treat rare disease/ultra,rare disease is vital and the only way this can be achieved is to find out how many children have got rare disease and ultra,rare disease.
What we do at the Foundation is the daily running of the Foundation we raise funds by finding sites to place charity boxes in although they have covered parts of Northern Ireland they still raise awareness of rare/ultra,rare disease the Foundation although it is a small charity their awareness campaign is gathering momentum you only have to go on to the web and type into it ultra rare disease/rare disease you will see just how far its word is stretching it is now global you can now find out about rare disease and ultra,rare disease the Foundation is changing its campaign it wants to highlight drugs that are used to treat rare disease the Foundation wants to raise awareness of what treatment is being used to treat rare disease/ultra,rare disease and the cost that is involved. It needs to know is cost the of drugs high due to reflecting the research or the manufacturing cost.
The Foundation is reaching out to families who are living with rare/ultra,rare disease they have found that families work round the clock giving care to a loved ones and that usually there is a very young child with rare disease/ultra,rare disease it usually affects very young children from the age of six months up to ten year old, families are not only dealing with a very young child they have endless hospital appointments they sometimes have to travel miles as their local hospitals may not have the experience in dealing with the type of disease that the patient has,The Foundation is working on setting up a family Network that will stretch worldwide,This is a huge task but it has to be done to try and find out just how many families are affected this is the only way that Drug Manufacturers will sit up and take notice if they can see just how many patients are out there it would encourage to put more into research as all companies need to know it it worth while for them and are they going to get returns from their investment the Foundation hopes that when it has carried out it may encourage them to do much more research into rare disease/ultra,rare disease it hopes it will encourage more families to come forward and sign up with our site. To build up a background to encourage drug manufacturers to sit up and take notice .
If you feel that you would like to become involved you can contact us
At The Ultra Rare Disease Disorders and Disabilities Foundation
86a Palmerston Road