Sustainable healthcare in this context can, for example, be understood as receiving a medical diagnosis in another country and subsequently being treated in one’s own country, based on advice and in consultation with a foreign centre of expertise.
The role of patient organisations is becoming increasingly important for all stakeholders: patients, their families, healthcare professionals, and the many other organisations involved in healthcare. Our international patient organisation CMTC-OVM has made a significant contribution to patients around the world over the past 25 years. In many cases, it takes a long time before (parents of) patients with a rare condition even know what they themselves have or what their child is affected by. Through searching the internet, they often found their way to the internationally oriented website of the CMTC-OVM organisation. By attending the annual international members’ conference, (parents of) patients are able to exchange experiences and, in some cases, a diagnosis can finally be established.
Our organisation has sought collaboration with institutions at the European and global level in order to increase awareness of the disease. The pioneering work of the 25-year-old CMTC-OVM organisation is fortunately receiving increasing recognition, as evidenced, among other things, by the invitation from the Dutch Ministry of Health, Welfare and Sport (VWS) to participate in several committees.
It is recommended that patient organisations be given a formal status in Europe, that requirements be set for professionalism, and that funding be arranged so that continuity (sustainability) can be better guaranteed. Our patient association has demonstrated that this approach can be effective. Ultimately, the shared goal for all of us is to improve the quality of life of patients and their families while keeping healthcare costs under control, thereby contributing to good health and well-being.