Co-Founder, CML Advocates Network
Founder and Managing Director, Patvocates
Jan studied business at the University of Regensburg (Germany) and Aston University (Birmingham, UK), graduating with a university diploma in Business Administration. He then worked for more than 4 years for the media company Bertelsmann (Germany). In 2000, he co-founded Bertelsmann's in-house startup BeMobile, heading product management, business development and marketing. In 2003, he joined Vodafone Group R&D (Germany) where he headed business modelling teams in Germany and The Netherlands and was leading multinational and multicultural innovation projects in Europe and Asia until 2008.
The reason for engaging in cancer advocacy in July 2001 was that Jan received his diagnosis of a rare cancer, Chronic Myeloid Leukemia (CML) at the age of 28 years. He joined a phase I/II clinical trial and started to translate and publish medical publications into German lay language. In 2002, he founded the online patient community Leukämie-Online/LeukaNET, which is one of the most frequented online platforms for leukemia patients in the German speaking Internet today. In 2007, Jan has co-founded the CML Advocates Network. It today connects 59 leukaemia patient groups from all continents, sharing best practice in cancer patient advocacy and running joint campaigns.
In 2003, he co-founded the European Cancer Patient Coalition (ECPC) to represent the views of cancer patient organisations in European healthcare, as well as to provide a forum for European patients to share best practice on patient advocacy. In the first years, Jan has been a founding member and Vice President of the Coalition. His activities included getting 315 ECPC member organisations from 42 countries connected, to speak on behalf of cancer patients at conferences, as well as working with various stakeholders to make information about clinical research more available to patients He has participated in a number of consortia of FP7-funded projects, e.g. RARECARE. In 2008, Jan left his job in the industry to turn his volunteer work for cancer patients into his profession. He became the first full time Director of the Coalition. He left the organisation in November 2010.
Today, Jan is Founder and Executive Director of Patvocates, taking forward a number of leading initiatives in the triangle of cancer policy, patient advocacy and social media. He is also a Board Member of the European Forum for Good Clinical Practice (EFGCP), Communications Manager of the International CML Foundation (iCMLf), and contributes in various advisory committees. He also acts as independent EU expert for reviews of FP7 projects, and is a patient representative in the EU Commission's Committee of Experts on Rare Diseases (EUCERD).
Contact: Jan Geissler -
Recent references, articles and weblinks:
- CancerWorld January 2010: "We, the Patients"
- German Cancer Society's FORUM magazine 3/2010: Informed Consent in Clinical Trials
- Rare Disease Blogs April 2010, Information to Patients Debate 2010 – as if the Internet was still a walled garden
- The burden of rare cancers in Europe. Adv Exp Med Biol. 2010; 686:285-303, Gatta G, Capocaccia R, Trama A, Martínez-García C; RARECARE Working Group (Hackl M, Zielonk N, Van Eycken E, Henau K, Schrijvers D, Sundseth H, Geissler J. et al.)