To: The Westminister Government
Ultra Rare Disease Must Be Included In The European Rare Disease Plan
When the rare disease plan was set up we think it has failed because it has left out children and adults with Ultra Rare Diseases this is a major mistake in the plan as it leaves out the people who most need the help in later life it also needs to cover the costs of orphan drugs and help for the families of all the patients who are going through the nightmare of rare disease every single day with round the clock health care
Why is this important?
Our Campaign is needed to put right a wrong that Rare Diseases are the same as Ultra Rare Diseases if you have a child with an Ultra Rare Disease it mean the child will not have the same conditions it will be harder for them to get orphan drugs because they are more expensive they need more health care they will have to spend longer terms in hospital and they wont always have a diagnosis children are waiting up to 8 years before they get a diagnosis and a plan has to include life time ring fenced health care ,housing needs, and round the clock health care support for families,
