For the purposes of medical underwriting in the insurance industry, these extremely low case numbers pose an enormous challenge: medical studies and statistically evaluable data concerning the progression of the respective diseases are only very sparse or virtually non-existent. As a whole, however, rare disease are a growing, global phenomenon. At present, for instance, approximately four million people in Germany have one of the 6,000 known, rare diseases. This is a continuing trend: the number of diagnoses will increase further as the number of known diseases grows. “The frequency of occurrence of these medical conditions amongst the population in Europe is currently about 7%. This accounts for almost 30 million people”, says Alban Senn, Medical Officer at Munich Re. “We anticipate that by 2020, about 10% of the population will be affected.” This number equals around 400 millions in Asia or 52 million in North America. This trend alone is indicative of the increasing relevance of rare diseases to the insurance industry. What’s more, many of those affected have a much higher life expectancy than was the case in the past thanks to enhanced diagnostic and therapeutic options. Cystic fibrosis as an example: Two decades ago, it was highly unlikely that a child with this metabolic disorder would reach adulthood. Due to optimised medical care, however, patients born with cystic fibrosis today have a very good chance of reaching the age of 50. “Those affected and their families have contributed significantly to this positive development”, says Karsten Filzmaier, Head of the Medical Centre of Competence at Munich Re. “They take advantage of modern communication technology in order to establish global online networks where they can share their experiences, make their voices heard and trigger medical research.” Cystic fibrosis patients have achieved tremendous success in this way. This relatively frequent, rare disease is known to a wider public today – and research regarding new drugs and treatments is being conducted by numerous scientist around the globe, who likewise are continuously improving their networks.