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To: The Northern Ireland Assembly Health Minister Mr Simon Hamilton.MLa
Ultra Rare Disease Must Be Included In The European Rare Disease Plan
Northern Ireland has not included Ultra Rare Diseases in its Northern Ireland Rare Disease Plan, Ultra Rare diseases effects up 8,000 children, Who have an Ultra Rare Disease, the plan makes no provision for how the Northern Ireland Assembly will meet the charges for orphan drugs that it may take to look after a child who has an ultra rare disease, they also did not tell us how they would meet the cost of a child who has major difficulties that Ultra Rare Diseases Cause including major disabilities, and learning and behavioural problems
Why is this important?
The Ultra Rare Disease Foundation wants the Northern Ireland Health Minister to reassess the Rare Disease Plan and Include children and adults who have Ultra Rare Diseases and ring fence their health care for life and also ring fence the cost of their drugs, orphan drugs are very expensive and research in Northern Ireland is very limited, we want the Northern Ireland Assembly to announce that the Belfast City Hospital becomes a Centre of excellence in the fight against Ultra Rare Diseases and Rare Diseases The Northern Ireland Plan does not include counselling services for siblings of patients with ultra rare diseases as young siblings have to deal with problems they may meet in schools from other children who don't understand what a ultra rare disease is, the plan also needs to ring fence care for a child who has a ultra rare disease as this takes 24 hour round the clock care for children and that care is down to the parents, we want it ring fenced for their health care which should be for the life of the child or adult. The plan also needs to ring fence children who have no diagnosis for sometimes up to eight years. We want their families to have the same support as a child with an Ultra Rare Disease .
