Monthly Archives: June 2014

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


Is Northern Ireland Keeping Up With The UK And Europe Union

Is Northern Ireland keeping up with the rest of the UK and the European Union has The  Health Minister given his response to the consultation document on rare diseases Northern Ireland seems to be dragging its feet on this matter as the deadline has now passed without any announcement from Minster Poots the Northern Ireland Health Minister

We Need Your Help


Help us raise much needed funds help us to improve are services you can help through help us so as we can help others

Rare Disease is not so Rare

Northern Ireland needs a Centre Of Exellence For Rare Diseases why can they not build it at the new sites at The Ulster Hospital or The Royal Victoria Hospital For Sick Children we need a Centre Of Excellence so make it happen Minister Poots

Rare Disease Information Blog From Urddad-Foundation

Welcome to our new blog we hope you will come back and read our blogs we hope you like the information we get you and if you feel you could add information then go ahead we don’t mind,All we ask you is to remember that this blogroll will be seen by children we will take down all bad posts that we feel is offensive to others we will not accept any bad language we will be monitoring this site daily all we ask is to remember that this site is for information about rare diseases and we hope it will point you to information that might be of use to you or your loved one

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