What Is Northern Ireland Doing About Ultra Rare Diseases

As Northern Ireland gets to grip with rare diseases what are we doing about ultra rare diseases ultra rare diseases will add more unforeseen problems to the Northern Ireland Health Service the needs of the patients may be greater will the Health Service be able to cope? Will the Health Service be able to fund research into Ultra Rare Diseases as the United Kingdom NHS is doing, we know Northern Ireland or Southern Ireland has not got a Centre Of Excellence For Rare or Ultra Rare Diseases we also know the Northern Ireland Health Service will be expected to fund its own Health Service in Northern Ireland where will the funding come from? As the NHS is split up into its own regions NHS England, NHS Wales, NHS Scotland and the Northern Ireland Health Service. Ultra Rare Disease Patients will they have the same health care as the rest of the United Kingdom as ultra rare disease patients have major health problems that will need life long medical care and lifelong personal care will Northern Ireland be able to cope with the added funding it will need,  we think it is time for answers and we need them now we need to know that Children in Northern Ireland will receive the same care as the rest of the United Kingdom and will receive the same treatment as the rest of United Kingdom patients who are being treated for Rare Diseases and Ultra Rare Diseases

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About jigsawtree

Hi my name is Terence Hoey I am CEO of The Ultra Rare Disease Disorders & Disabilities Foundation LTD a non for profit charity our address is Palmerston Road Sydenham Belfast Co Antrim Northern Ireland BT41QD

Posted on June 24, 2014, in Uncategorized. Bookmark the permalink. Comments Off on What Is Northern Ireland Doing About Ultra Rare Diseases.

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