We have seen news report and heard from United Kingdom Politicians it is hard to believe that they are making decisions that can affect every single person within the United Kingdom we have to ask ourselves what will happen to children who have rare and ultra rare diseases it was only a few years ago they agreed the European rare disease plan and every part of the United Kingdom signed up to it was ground breaking news this plan was for the whole of Europe.
The European Rare Disease Plan had taken years to put in place it was ground breaking within the European Union and Ground Breaking in the world a plan that was going to tackle rare disease that included research. treatments .networking, and setting up a computerising system to help GPs to help in the diagnosis of a rare disease the buzz word at the time was centres of excellence this was ground breaking stuff in the world of rare disease considering rare and ultra rare disease was not talked about
We have to shake ourselves and wake up to the fact that the rest of the European Union will be trail blazing in rare and ultra rare disease research and funding new drugs. and families will have a support system that will be the envy of the rest of the world while the United Kingdom wakes up to the fact the there are families out there who have rare or ultra rare diseases in the family circle.
Treatment and care is very expensive and in all the drugs that are produced rare and ultra rare disease drugs are the most expensive to research and put into production due to volumes required it makes production a very costly product due to the numbers of tablets or serums that may be required drug companies are set up for producing vast quantities of drugs and they are not set up for the production of small quantities and if they are again it is costly added to that their research costs.
Is the United Kingdom ready and willing to stay within the European Union or will it meet it agreements that it has with the European Union Rare Disease Plan or will it exit the European Plan on the 29th March 2019 will the politicians agree that rare and ultra rare disease is to costly for the United Kingdom to go it alone and it will stay within the European Plan for rare and ultra rare disease