The "Leukemia Patient Advocates Foundation" is a patient-led non-profit foundation in Switzerland. Its mission is to improve the lives and survival of patients affected by leukemia as well as their relatives by supporting leaders in providing help and support. It is a platform for discussions and best practice sharing to leukemia patient groups worldwide. The foundation collaborates with all stakeholders involved in research, treatment and care of leukemia patients. The foundation acts as a platform for patient organisations – concentrating on educating, connecting and supporting patient group leaders rather than services to patients.
Vision and Mission of the Leukemia Patient Advocates Foundation
Our vision is a world in which all leukemia patients have access to the best treatment, care and support available.
Our mission is:
- To improve the lives and survival rates of patients affected by leukemia, as well as their relatives, world wide
- To support patient leaders in providing help and support to leukemia patients and their relatives
- To provide a platform for education and best practice sharing of leukemia patient groups world wide
- To collaborate with other stakeholders involved in research, treatment and care of leukemia patients
CML Advocates Network and CML Horizons
The Leukemia Patient Advocates Foundation hosts the global "CML Advocates Network" (http://cmladvocates.net) more than 100 patient organisations in almost 80 countries on all continents. The CML Advocates Network is a worldwide network designed and run by CML patients and carers who are registered patient group advocates and organisers.
The Leukemia Patient Advocates Foundation hosts the "CML Horizons" conference as the annual global leadership meeting that welcomes patient leaders from all world regions (http://www.cmladvocates.net/cmlhorizons). An elected "CML Horizons Steering Committee", as a steering committee (as defined in the foundation's statutes) within the Leukemia Patient Advocates Foundation, carries all responsibility to run the "CML Horizons" conferences. Following elections by the worldwide CML community in May 2013, the CML Horizons Steering Committee consists of the following eight members of which six are CML patients themselves, and which represent all major regions of the world:
- Bahija Gouimi (Morocco, region: Middle East & Africa)
- Gail Sperling (USA, region: Middle East & Africa)
- Giora Sharf (Israel, co-founder & permanent member of the Steering Committee)
- Jan Geissler (Germany, co-founder & permanent member of the Steering Committee)
- Jana Pelouchová (Czech Republic, co-founder & permanent member of the Steering Committee)
- Rita O. Christensen (Denmark, region: Western Europe)
- Pat Garcia-Gonzalez (USA, region: Latin America)
- Rod Padua (Philippines, region: Asia-Pacific)
- Jelena Cugurovic (Serbia, region: Central and Eastern Europe & West Asia)
MPN Advocates Network
The Leukemia Patient Advocates Foundation hosts the global "MPN Advocates Network" (http://www.mpn-advocates.net). The Network was founded by representatives from the Netherlands, Spain and the UK. The MPN Advocates Network's immediate goal is to increase the international scope of the organisation by contacting MPN patient groups in other countries and inviting them to become part of the network. The initial focus will be groups in Europe, but the intention is to be a world-wide organisation.
A Steering Committee (as defined in the foundation's statutes) within the Leukemia Patient Advocates Foundation carries all responsibility to run the MPN Advocates Network. The members of the Steering Committee are:
- Jonathan Mathias, Patient Chair, MPN Voice, UK
- Dr Karin Klauke, Interim Chairperson, MPN Stichting, The Netherlands
- Prof. Claire Harrison, Guys & St Thomas' Hospital, UK
- Tony Gavin, Director of Campaigning and Advocacy, Leukaemia Care, UK
In addition, Giora Sharf (Israel), as a trustee of the Leukemia Patient Advocates Foundation, supervises the finances of the MPN Advocates Network and its compliance with swiss regulatory requirements regarding the non-profit status.
Board of the Leukemia Patient Advocates Foundation
The foundation's statutes mandate the foundation board only with supervisory and financial management roles, while its statutory committees, as listed above, are fully self-governed, autonomous initiatives. Projects are run by the committees, not by the foundation board. Formally, the Leukemia Patient Advocates Foundation is represented by the following trustees of the Foundation:
- Jana Pelouchová (President, Czech Republic)
- Jan Geißler (Vice President and Managing Director, Germany)
- Giora Sharf (Treasurer, Israel)
- Erik Aerts (Board Member, Switzerland)
Registered Address & Contact Details
We are purely patient-run, non-profit and public interest, and we have no legal department. Talking to each other first is always the best solution. If you see a challenge for whatever reason, please contact us directly - we are very confident any issue can be solved.
Written correspondence is preferred to be sent to the following address: