What Will Brexit Mean For Rare/Ultra Rare Disease

What will happen to The European Rare Disease Plan that the United Kingdom signed up to when it agreed with the rest of Europe that it would work with the rest of its European Partners in setting up a network of centres to help with diagnosis of rare diseases they also agreed that they would set up centres of excellence we need answers to what will happen to these plans when the United Kingdom Finally Breaks Away.

Children up and down the United Kingdom who are living with Rare / Ultra Rare Diseases never had the chance to say what they wanted,Children who are living with complex needs,Children who will need complex care for the remainder of their lives,Our concerns should be about how will the United Kingdom meet their needs outside Europe, How will the United Kingdom meet the needs of these children with an over stretched Health Service facing huge cut backs in care this is not taking into account the huge cost of treatments for children with rare/ultra rare diseases should these concerns not be taken into account.

We demand our Members of Parliament who are debating the United Kingdom Exit just to take a few moments and ask themselves the question what Will Brexit Mean For Rare/Ultra Rare Disease, The Ultra Rare Disease Disorders And Disabilities Foundation stand up for the children up and down the United Kingdom and the parents of these children who are doing round the clock care and for these children who are being treated in our hospital wards, and for all those little children lying in our hospital beds without a diagnosis we speak for them and ask the United Kingdom Parliament to tell us and give us the answer to our question What Will Brexit Mean For Rare / Ultra Rare Disease.

Will our Parliament back its words it made in the European Plan On Rare Disease Will it give assurances that it will stand by the United kingdom plan for Rare Disease will it gives assurances to Children living with Rare Disease/ Ultra Rare Disease in Northern Ireland when the United Kingdom’s NHS said Northern Ireland is in an ideal position as it has a European Neighbour on its border and it could use hospitals in another part of Europe and save travel costs that children and parents have to pay for expenses that it takes having parents and children travel to the rest of the United Kingdom for treatment will they give assurances that they will meet these charges if indeed patients and families do use hospitals in Ireland will they meet the costs of care and treatment that these children will need.

Northern Ireland has no assembly as its MlAs have been unable to come to any agreement on the way forward and its vital for the families within Northern Ireland who have children with rare /ultra rare disease need to be assured that care will not change when the United Kingdom leaves Europe they need assurances that they still will be able to use hospitals in Ireland and the United Kingdom will ensure that treatment will not change within Northern Ireland

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