The Leukemia Patient Advocates Foundation is a patient-led non-profit foundation in Switzerland. Its mission is to improve the lives & survival of patients affected by Leukemia. It is a platform for discussions & best practice sharing to Leukemia patient groups worldwide. The foundation collaborates with all stakeholders involved in research, policy, treatment and care. It also acts as a platform for patient organisations – concentrating on educating, connecting and supporting patient group leaders.
The foundation acts as a legal platform for self-sustained patient advocacy networks: The CML Advocates Network (128 patient organisations in 93 countries), the MPN Advocates Network, the CLL Advocates Network and the Acute Leukemia Advocates Network (ALAN).
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, worldwide
- 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 worldwide
- To collaborate with other stakeholders involved in research, treatment and care of leukemia patients
CML Advocates Network
Hosted by the Leukemia Patient Advocates Foundation, the global "CML Advocates Network" (https://cmladvocates.net) connects 128 patient organisations in 93 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 (https://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 2019, the CML Horizons Steering Committee consists of the following nine members of which six are CML patients themselves, and which represent all major regions of the world.
- Felice Bombaci (Italy, Western Europe region representative; Co-chairman of the CML Advocates Network)
- Sarunas Narbutas (Lithuania, Central and Eastern Europe & West Asia region representative; Co-chairman of the CML Advocates Network)
- Giora Sharf (Israel, co-founder of the CML Advocates Network)
- Jan Geissler (Germany, co-founder of the CML Advocates Network)
- Jana Pelouchová (Czech Republic, Co-founder of the CML Advocates Network)
- Bahija Gouimi (Morocco, Middle East & Africa region representative)
- Lisa Machado (Canada, North America region representative; Treasurer of the CML Advocates Network)
- José Castro (Costa Rica, Latin America region representative)
- Rod Padua (Philippines, Asia-Pacific region representative)
The management is supported by the Executive Director, Denis Costello with our Head of Communications and Programme Manager Celia Marín email@example.com and the Programme Manager Lidija Pecova firstname.lastname@example.org
MPN Advocates Network
Hosted by the Leukemia Patient Advocates Foundation, the global "MPN Advocates Network" (https://www.mpn-advocates.net) 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 worldwide organisation.
The MPN Advocates Network hosts the "MPN Horizons", the international conference for MPN patient advocacy leaders, works on educating patient advocates, building patient groups’ capacity, implementing advocacy initiatives with a real impact in the countries and finally enforcing cooperation in the global “MPN Advocates Network”.
A Steering Committee within the Leukemia Patient Advocates Foundation carries all responsibility to run the MPN Advocates Network. The members of the Steering Committee are:
- Chairperson: Jon Mathias, London UK
- Vice Chairperson: Peter Loffelhardt, Barcelona/Switzerland
- Secretary/Treasurer: Cheryl Petruk, Canada
- Giora Sharf, LePaf Representative, Israel
- Felice Bombaci, Italy
- Lexi Moore & Michelle Woehrle , USA
- Mirjana Babamova, Macedonia
- Robi Zelig, Israel
- Werner Zinkand, Germany
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.
For more information, please visit the MPN Advocates Network website
CLL Advocates Network
Hosted by the Leukemia Patient Advocates Foundation, the establishment of the CLL Advocates Network (CLLAN) (https://www.clladvocates.net) and commencement of the new network’s activities aims to ensure the successes seen in CML are replicated for CLL and common goals are shared. The CLL Advocates Network (CLLAN) was founded by representatives from Canada, Czech Republic, France, Israel, Portugal, UK and the United States. The CLL Advocates Network Steering Committee consists of the following 8 members, of which 3 are CLL patients and one a carer. The other members are CLL patient advocates:
- Nick York, UK - Interim Chair
- Pierre Aumont, France - Vice-Chair
- Jana Pelouchova, LePAF Rep, Czech Rep. - Treasurer
- Michael Rynne, Ireland - Communications Officer
- Felice Bombaci, Italy
- Brian Koffman, United States of America
- Deborah Baker, Canada
The CLL Advocates Network’s immediate goals include connecting across the globe with CLL patient groups, CLL patient advocates and patient organisations supporting blood cancer patients including CLL.
The CLL Advocates Network hosts the "CLL Horizons", a unique opportunity for CLL patient organization representatives to meet and network, giving them the opportunity to discuss issues facing CLL patients and hopefully start to think about what they could do better to help CLL patients in their communities.
Acute Leukemia Advocates Network (ALAN)
The ALAN is an independent global network of patient organisations representatives and patient organisations, dedicated to
- changing outcomes of patients with acute leukemias by strengthening patient advocacy in that area by developing patient information and specific support for patients with acute leukemias and their carers in all countries;
- strengthening patient organisations by sharing best practices and providing toolkits in patient advocacy;
- creating awareness about acute leukemias and how to better support leukemia patients; advocating for better treatment, care & access to healthcare services;
- improving education for healthcare professionals serving leukemia patients as well as collaborating with other initiatives and stakeholders with similar goals.
Similar to the CML Advocates Network, MPN Advocates Network and CLL Advocates Network within the LePAF, the ALAN is not a network mainly targeting (english-language) patients and carers directly, but acts as a “network of organisations”. It aims to build capacity in the members of the network to deliver tailored services to acute leukemia patients and carers on the national level, while joining forces between organisations on the policy and research level across countries.
The first ALAN Steering Committee consists of the following patient advocates:
- Zack Pemberton-Whiteley, Chair (UK)
- Anita Waldmann (Germany)
- Sophie Wintrich (UK)
- Jan Geissler (Leukemia Patient Advocates Foundation representative)
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:
Am Rothenanger 1b