What Happens After Brexit To Research And Drug Manufacturing For Rare/Ultra Rare Disease

When the United Kingdom leaves the European Union what will happen to research into rare/ultra rare disease and the manufacturing cost of drugs for rare/ultra rare disease will the United Kingdom still work with the rest of the European Union will the European Rare Disease Plan still be workable or will The United Kingdom go it alone and do its own research into rare/ultra rare disease if that is the fact surely that will increase the cost to the United Kingdom.

Drugs are by far the most expensive for rare/ultra rare disease due to the overall numbers involved it makes drug manufacturing very expensive would the United Kingdom and NICE approve such drugs after the split with the European Union or would they reach agreement with the European Union in the Manufacturing of drugs for rare/ultra rare disease patients and families need to be assured that drugs and research will not be affected if the United Kingdom splits away from the European Union.

Research is vital to fight many diseases we all need to be assured that the cost of research will not impact on research after we leave the European Union we still need centres of excellence for the diagnosis of rare/ultra rare disease although the United Kingdom has many centres of excellence yet Northern Ireland has none, centres of excellence were set up to speed up the diagnosis process yet in Northern Ireland patients are still waiting weeks while their bloods are sent to other parts of the United Kingdom to try and get a diagnosis.

We understand why people are worried about research, cost of drugs, these are questions that need to be answered


  1. I seldom create remarks, but i did some searching and wound up here What Happens After
    Brexit To Research And Drug Manufacturing For Rare/Ultra
    Rare Disease – The Ultra Rare Diseases,Disorders & Disabilities Foundation. And I
    actually do have a couple of questions for you if you do not mind.

    Is it simply me or does it look as if like some of the comments come across like written by
    brain dead people? 😛 And, if you are writing on other sites, I’d like to keep up with everything fresh you have to post.
    Would you list of every one of all your community pages like your twitter feed,
    Facebook page or linkedin profile?

  2. terryhoey

    First of all I would like to thank you for your comments, we are glad to answer your comments also when you talk about rare disease or ultra rare disease you just cannot imagine the impact they have on the children and on the parents and the families when a doctor or a consultant comes to you and tells you that your child has a rare or an ultra rare disease or even both then being told that there are a hundred children in the world with the diseases that your child has and that drugs are not available due to the amount of children that has these diseases, how could you possibly put yourself in their position the strain it puts on them and the family is just unbearable the parents feel guilt as they blame themselves.Research for rare and ultra rare disease is vital to help these children and their parents and families, many people do not  really stand back and think just how they would cope if they or a family member were in this position just how they would really feel it’s just too hard to imagine yet it is happening when will the richest nations join together and fund research into rare and ultra rare disease why can’t our major drug companies bring down the price of drugs for rare and ultra rare diseases our governments  spend huge amounts of money on research into other diseases why not rare disease and ultra rare disease  

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