Jan Geissler

Jan Geissler is the Director of the European Cancer Patient Coalition (ECPC), representing more than 300 cancer patient groups across Europe. He is a co-founder of the organisation which started in 2003. Since his diagnosis of a rare cancer (Chronic Myeloid Leukemia) in 2001, he has been running his online community and blog http://www.leukaemie-online.de which is one of the most frequented patient websites on leukemia in the German speaking Internet today. in 2007, Jan has co-founded the CML Advocates Network (http://www.cmladvocates.net) which is connecting 40 CML patient groups across the globe today. Before he became a full time advocate in 2008, he held various managerial positions in the telecommunications and media industry.

Information to Patients Debate 2010 – as if the Internet was still a walled garden

Being diagnosed with cancer, or experiencing a recurrence, often puts individuals and their families in an emotional roller coaster ride. Moreover, treatment decisions often need to be taken quickly. To make an informed choice between the bad and the ugly, patients desperately seek for quality information. Whilst the political debate around “information to patients” and “advertising” has been going on for years as if a walled garden would still exist, or could still be built around Internet websites, European patients continue to suffer from the lack of access to quality information while the alluring bait of miracle healers, counterfeit online pharmacies and door-to-door advertisers continues to be omnipresent. “Information to Patients” now requires new courage, commitment and real action now – the current EU political momentum on “Information to Patients” is timely and welcome.