In early November EHE patient Mariana Coutinho participated as one of the main speakers in a round table event at the European Parliament, in Brussels. The round table was hosted by Youth Cancer Europe and discussed cross-border healthcare with an audience of MEPs and key stakeholders. Mariana posted “I was invited to share my story, since I reside in Portugal and I am getting medical treatment in the UK (my oncologist, Dr Robin Jones, works in London and I underwent Nanoknife IRE procedures, also in London).”
Mariana also explained some of the background to the subject, and its importance to rare diseases. “Directive 2011/24/EU on patients’ rights in cross-border healthcare states that EU citizens have the right to access healthcare in any EU country and to be reimbursed for care abroad by their home country. This subject becomes even more relevant for us, being rare cancer patients, who most of the time struggle to find a specialist in our disease in our own countries which need specialized treatment (such as Nanoknife/IRE). Other circumstances in which this directive might apply is cases of patients that need an urgent organ transplant that could be offered to them more quickly in another EU member state or patients that are eligible for a clinical trial that is being conducted in another EU member state, for example.”
We want to congratulate Mariana, whose speech went gone down very well indeed, and thank her for her ongoing drive and dedication to rare cancer advocacy and particularly EHE.