In medicine, diseases are considered rare if less than one out of 2,000 people are affected. This criterion has become misleading over time, because such diseases are not rare, but so far they have simply been neglected. For each individual disease there are relatively few patients who suffer from it, but there are over 7,000 of these diseases, which affect over 230 million worldwide. In Switzerland alone there are 400,000 people affected of which most, (75%) are children.
Health is a precious good; and often, people only learn how to appreciated it when it is threatened. We can do a lot for our health, but it is not only in our hands as most rare diseases are not preventable.
The reason for most of the rare diseases is a genetic alteration that was not previously treatable. Although medical research has developed rapidly over the last 100 years and achieved great progress there is still a very long way to go with many unanswered questions. This leaves a lot of knowledge – including traditional knowledge – to be explored and exploited. We look forward to this and already bridge the gap between traditional and modern knowledge with a holistic approach. We will find a solution to the problem.
The life of a patient affected by a rare disease is accompanied by problems up to and including severe health problems. There are also fears, which are due to the fact that there are no drugs or treatments available.
From the currently 7,000 rare and neglected diseases known today, around 75 percent of those affected are children. Many of them, due to lack of medicines and therapies, will never reach the age of five.
For those affected and their relatives, these diseases represent a major strain and immense suffering on a daily basis. For a diagnosis, if any, people often wait several years. Many doctors do not know the disease and there are few specialists or centers who are familiar with treatments. Patients often die before an appropriate treatment is found.
Additional Links:
- ORPHANET: Information about rare diseases
- EURORDIS: European Organisation for rare diseases
- PRORARIS: Alliance for rare diseases – Switzerland
