Rare Disease Day 28th February 2011 Sees Start of New Group

The Cavan Tommy Hoey Trust organisors of Rare Disease Day in Northern Ireland have set up a new group that will be called Raredisease Northern Ireland  Forum.  It has been established to run and to organise Rare Disease Day, it will also set up a forum for patients and families and carers of people with rare diseases. It will  be a support network for patients and families and carers of people with rare diseases. It has also been formed to give help and support and to give advice to parents and families. We will aslso give information support to  families that are caught in the nightmare of having a child who has been  undiagnosed.  This will be a totally Northern Ireland Group and will look after local issues within the Northern Ireland Health Service and the Northern Ireland Social Services. It will also lobby Northern Ireland  Assembly  MLAs. Raredeisease Northern Ireland will be a lobby group lobbying for the rights of families with rare diseases and will be run by families of people with rare diseases.

We would ask anyone who is interested in becoming a member of the group to please contact the co-ordinator at:

Raredisease Northern Ireland
C/o 86 Palmerston Road
Sydenham
Belfast
Co Antrim
Northern Ireland
BT4 1QD