Colm Burke, a Member of the European Parliament from Ireland, has called for better EU-wide sharing of information on rare diseases. Speaking on the eve of European Rare Diseases Day, he Burke said: “We need to focus on rare diseases at the EU level. Ireland often does not have enough capacity to specialise in the treatment of rare illnesses, as is the case for other small member states. Rare diseases are a special when it comes to treatment of illness. Often, it is not possible to obtain life saving treatment at home.
I am the beneficiary of cross-border healthcare, having received a Swedish treatment in a hospital in Sheffield,” he added. “I was lucky enough to be able to afford to pay for accessing this treatment, and it is now my top priority that those who are not so lucky will be able to access this type of life-saving care without having to worry about the financial consequences for themselves and their families.” Burke is currently leading negotiations for the EPP-ED Group in the European Parliament’s Internal Market Committee on the proposed Directive on Patients’ Rights to Cross-border Healthcare.