Europe's plan to fight rare diseases
Vytenis Andriukaitis, the European commissioner for health and food safety, tells the FT’s Andrew Jack and science editor Clive Cookson about the creation of EU-wide healthcare networks to connect patients and doctors with the best research and expertise.
Transcript
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On Rare Disease Day, what new initiatives will there be to help tackle the challenge of rare diseases, those elements that are elements that are often neglected. I'm Andrew Jack. Joining me now is Clive Cookson, our science editor, and via Skype in Brussels is Vytenis Andriukaitis, European commissioner for health. Commissioner, first of all, tell us on this Rare Disease Day, you were just at Leuven today or Liege to look at one of the first of these European reference network centres. Tell us a little bit more about what their role will be and how much of a breakthrough they will provide.
OK. European reference networks means that they have good opportunity to unite all hospitals around all 28 member states in some networks or some pathways addressing specific diseases. At the moment, we have 24 European reference networks related to 24 pathology. It helps us to establish a IT platform in which all hospitals can communicate and discuss treatments and organise [INAUDIBLE] and of course also provide diagnoses and related to area diseases.
For example, today we have good opportunity to see children oncology example in Leuven. You know, in Belgium, in some cases, they have only 10 children who are suffering from those very rare diseases. And they have no chance treat those diseases without cooperation between UK, France, Germany, and Belgium.
Let me just ask my colleague, Clive Cookson, for a second who, Clive, you were involved in writing this FT special report out today in combating rare diseases. What do you think's perhaps the most exciting breakthroughs in science around rare disease at the moment?
Well, just before I answer that, I should tell the commissioner that I was at a rare-diseases lunch at the House of Commons in London just now. And all the speakers said how keen they were to join the European reference network. So we'll be enthusiastic participants in that particular European endeavour.
In answer to your question, Andrew, from the scientific point of view-- and science and research are the theme of International Rare Diseases Day this year-- genomics is clearly the answer. For the first time, we have the equipment that can read human DNA quickly enough and then computers and IT to analyse it well enough to begin to unpick the genetic causes of these rare diseases. And although we don't know yet, because this endeavour's still in infancy, it's reckoned that 70% to 80% of rare diseases do rest in the patient's DNA.
Do you think we can have some sense of assurance that even whatever happens with Brexit, there'll still be a way to cooperate with the UK with the rest of Europe around research and access to orphan disease treatments?
Sorry to say, I see that science have no borders. Science is international. International cooperation is always. It was and is and will be in the future.
No one country has chance to address rare issues. Doesn't matter, UK or Malta-- no one. It means that only one way to see how to establish better links and cooperation mechanisms and to see how to continue our cooperation in those European reference networks.
Commissioner Andriukaitus, and Clive Cookson here in London. And from me, Andrew Jack, thank you very much.
