Month: April 2014

In 28 European countries, cancer is now the leading cause of premature death, having overtaken cardiovascular disease (WHO European health report, 2012), and in 2012 there were 1.75 million cancer-related deaths in Europe (Ferlay et al., 2013). Cancer survival rates across Europe are highly variable with survival rates in Eastern Europe between 10-20% lower than … Read more

Precision medicine, or personalised medicine, describes the use of therapies that are specifically chosen for the patient based on the molecular characteristics of their disease. It is an emergent field in healthcare, made possible by recent advances in molecular and genetic diagnostic technology. Genetic disorders are particularly amenable to precision medicine, as it is now … Read more

In the first week of April, the International Kidney Cancer Coalition (IKCC) held its 4th Expanding Circles conference in Amsterdam. The meeting brought together kidney cancer patient advocates from all over the world to discuss current and future treatments, best practices and how to improve the outlook for kidney cancer patients globally. Professor Peter Boyle, … Read more

How many people have BHD? Who will develop which symptoms, when?  How severe will they be? These are very straightforward questions, but there is not sufficient information to accurately answer them at the moment. This is where patient registries are so powerful, particularly for rare diseases. A patient registry simply stores an individual’s personal information … Read more