The Rare Disease Consultation Plan For Northern Ireland

The Rare Disease Consultation  Plan For Northern Ireland.

Has now been released for consultation, but it is failing in many aspects of dealing with rare diseases and links with Southern Ireland and its major Hospitals yet it stated in the NHS Consultation that Northern Ireland was in an ideal situation that it had a land border with another member state of the European Union and they could work to further to the needs of patients with rare diseases,it has only been given a few lines in the whole Consultation.

Also, this document falls far short of caring for patients with Ultra Rare Diseases in fact, they have not even been included in the Consultation process to find out what patients with an ultra rare disease have to go through they also seem not to grasp that we are dealing with Children from the age of five years old to ten year olds as rare and ultra rare diseases affect children in that age group the Consultation Document fails to take in the care that is needed for a child with an ultra rare disease and how this is causing the family to break down leaving a single parent to cope with round the clock care,

Ultra Rare Diseases are life limiting, but due to the prognosis a child can extend its life and the consultation does not cover this important issue as it brings more difficulties for the parent/parents as the child grows older it needs more help and more attention and more specialized  treatment and more care in the home and the needs of the child are greater,Health Care in the Community has not been included for ultra rare disease patients the whole process has been let down because of the lack of understanding about Ultra Rare Diseases,and Rare Diseases

Due to the Consultation Document it fails to include the hospitals in the South of Ireland and how it plans to include this vital link to the rest of the European Union that the NHS sees as a vital link to Northern Ireland that needs to be explored the document also fails to recognize the importance of links between member states health services and fails to include and see   the benefits of joining the  ORPHANET web site for information and links to other groups in Europe Please read our full response to the Northern Ireland Consultation Plan On Rare Disease if you want to email us in regard to our short statement please do so by contacting


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 6, 2014, in European Plan For Rare Diseases and tagged , , , , , , , . Bookmark the permalink. 1 Comment.

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