A new website has been launched in Switzerland to help patient organisations improve their communication and coordination.
The aim of www.patients.ch is to help support groups offer advice on treatments and present the latest developments in research.
"A lot of patient organisations are pretty small," said Dominik Büchel, who is coordinating the project. "They do not have the resources to get themselves organised in a way that everyone has the relevant information at the right time.
"There is a lot of work to be done by very few people who have to get up to date with the medical information and with political developments."
Hundreds of patient organisations exist in Switzerland nationally and locally. Their work also involves support for relatives and maintaining contacts with authorities and hospitals.
"We are mainly interested in national or at least regional associations and organisations, and the potential for the website is about 200," said Büchel.
"We would be pretty happy if there were 20-30 in the first year and another 20 in the second year."
The online platform will enable all the interested organisations to make information accessible via the internet.
Büchel says patients today are getting much better informed but it's important they can have access to reliable data.
"I don't think you can talk about the informed patient without supporting the patients' organisations because it is where the most important information is being distributed and which people trust," he said."
www.patients.ch is being supported by the Swiss Academy of Medical Sciences, the Swiss Huntington Association, and Pharma Information.
by Vincent Landon