Rare Disease Consultation Plan Is It In Danger If The Northern Assembly Collapses ?

The Northern Ireland Assembly could collapse will it also mean the Rare Disease Consultation Plan will also go down with it,The Foundations biggest fear is that if a plan was not produced it would be left on the long finger, What will happen if it is direct rule with the United Kingdom Government also fails to produce a plan as they are also having discussions within and outside the government whether or not to stay within the European Union and if the United Kingdom was to pull out of the European Union what will happen to their plan will it also be put in danger we feel the United Kingdom Rare Disease Groups would need to have assurances on the plans that have already been agreed.

Rare Disease and Ultra Rare Disease Patients, families and carers should be kept updated on how it may affect them and how it could affect their child’s treatment, How will leaving Europe impact on our health services  and  diagnosis of new Rare and Ultra Rare patients Northern Ireland has a land border with a member state the NHS in its Rare Disease consultation document stated that Northern Ireland was in a unique position as having a land border with a member state could work on joint interests,We see that also as a major plus to Northern Ireland as it could mean Hospitals on both sides of the border could work together and share information we see that as a major step forward for the health services of Nothern Ireland as we thought that moving children’s heart services to Hospitals in the South of Ireland a great step forward it can only be good for the patients.

The Foundation will be releasing its own response to the consultation document after it has discussed with other interested groups and local politicians we could not understand why we are going through another consultation when the United Kingdom released its Strategy for Rare Disease and Mr Edwin Poots signed off on it, we felt it was a total waste of time and money that the Northern Ireland Health Services do not have to produce another  consultation document when it already had its chance to raise any concerns that it had if any  at that time of the United Kingdom Consultion Document .The Foundation felt a plan should have been published  with Scotland,Wales,Ireland, to ensure a complete linkage  and commitment in how Scotland,Wales,Northern Ireland and Sourthern Ireland could work together and share research and information and agree that all members make links with orphanet europe.


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 December 14, 2014, in Children With -bohring-opitz-syndrome., Children With HLH, Children With Rare Brain Diseases, Children With Rare Cancers, Children With Rare Diseases, Children With Ultra Rare Diseases, Children With XLP, European Plan For Rare Diseases and tagged , , . Bookmark the permalink. Comments Off on Rare Disease Consultation Plan Is It In Danger If The Northern Assembly Collapses ?.

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