Ultra Rare Diseases, Disorders and Disabilities Foundation

The Ultra Rare Diseases, Disorders & Disabilities Foundation (Urddad Foundation) are a charity recently set up by two individuals from Northern Ireland who also set up and run The Cavan Tommy Hoey Trust in June 2008 over a period of dedication to children with extra needs who are affected by rare disease/ultra rare disease.

Directors of the foundation has a grandchild with two rare blood diseases known as EBV- HLH and XLP he was diagnosis ed on the 28th November 2007, they know first hand how rare diseases/ultra rare disease, disorders & disabilities can affect children and their whole family circle.

Both Directors set up The Cavan Tommy Hoey Trust and held Northern Ireland first ever Rare Disease Day 28 February 2008 they both worked hard to raise awareness of rare/ultra rare diseases in Northern Ireland Terry Hoey was blogging day and night his efforts were rewarded he was interviewed by BBC Northern Ireland News.

Rare disease automatically went viral Terry Hoey then had Kidney Failure in November 2010 he still worked on, and the trust was the only charity or group who sent papers to the European Union on The European Rare Disease Plan He also was very keen to ensure that Northern Ireland had a First Class Ambulance service.