The Ultra Rare Disease ,Disorders & Disabilities Foundation

The Ultra Rare Disease Disorders,& Disabilities Foundation (urddad_foundation) A charity set up by families who have been affected by Ultra Rare Disease, their lives have be greatly affected by the diagnosis of a rare disease, the families decided they had to do something about it,one family decied to set up The Cavan Tommy Hoey Trust it been in operation by Cavan's grand parents for the past 5 years they had both agreed they would set up a foundation to help families and children who have been diagnosed with a rare disease.

Our aim is to help both children,adults and their families who have been diagnosed with a rare disease or an ultra rare disease,rare diseases come in many different forms from names like XLP and EBVHLH to Rare Cancers, Rare Heart Conditions,Rare Kidney Diseases, and the list goes on being diagnosed of a rare disease is not that rare and it affects many adults and very young children it usually strikes children from the age of five year old and sometimes even younger, the main problem with rare disease is research,funding,drugs,and diagnosis and understanding of the diseases some children have Ultra Rare Diseases and that means fewer that 100 or less children in the world with the disease.

The problems that patients and families face are long journeys to hospitals that can treat rare disease or even diagnose a rare disease sometimes it can take up to 5 years to get a diagnosis and then they have to find a treatment centre that can be miles away from their home, the strain on the families is so immense that it causes family breakdown,siblings also suffer anxiety problems and their school life suffers due to the immense strain they are under at home and at school as having a rare disease it not like any other illness or known disease “The Name Rare”frightens people,

Rare diseases bring with them many other illness sometimes brain injury,disability or disorder,the Foundation wants to help families get through the problems that rare disease causes, we want to help families cope, we want to help the patient cope, our aim is to set up a home from home we know that will cost money and rare disease gets little to none in funding, families need help in anyway possible we know we can help we know the pitfalls, by supporting us you will be supporting the patients and their families, help us to set up a family day centre to enable families to come and meet with other families to enable them to have some free time to talk and have a coffee knowing their children are being cared for by our child care staff by helping us with funding you will be giving us much needed funds to set up a centre,WE NEED YOUR HELP NOW

The Foundation needs volunteers could you give up sometime to help our cause we need help with Fund Raising, Street Collections,Team Leaders,Walks, Awareness Days,Coffee Mornings,Craft Days,Activity Days, We need help in all areas of fundraising could you give up some time to help children and adults who face a very uncertain future all we ask is you time

Come along to our family Link days held at Strand Presbyterian Church 161 Connsbrook Ave Sydenham Belfast BT41JT 11-00am to 3-00pm on the first Tuesday of every month and the Third Tuesday every month

Jig Saw is for Sibilings and Patients with disabilities this group will be held on every second and fourth Tuesday of the Month Kids First will be set up to help children have their time to play and try to forget and to make new friends and new contacts we hope to have plenty to keep the kids entertained from sensory toys to face painting we intend to hold Kids First after school days please watch our site for more updates and times visit www.urddad-foundation.org.uk

The Ultra Rare Disease Disorders,& Disabilities Foundation (urddad-foundation) is a Northern Ireland Charity our registration number is NI 00089 and we are based in Belfast Northern Ireland we are also a private limited Charitable Ltd Company registration number

N1617725 incorporated on the 5/04/2013