The Leukemia Patient Advocates Foundation (LePAF) is a patient-led, charitable non-profit foundation registered in Switzerland. Its mission is to improve the lives and survival of patients affected by leukemia and other hematological malignancies.
In order to improve the life and survival rates of leukemia patients worldwide and in order to support their relatives, the foundation offers an international platform for the education of and the exchange between patients advocates as well as their organisations.
The foundation cooperates with the most influential players that deal with the research and therapy of hematological cancers as well as healthcare policy and patient advocacy.
The foundation acts as a legal entity for four self-sustained patient advocacy networks:
- CML Advocates Network (CMLAN)
- MPN Advocates Network (MPNAN)
- CLL Advocates Network (CLLAN)
- Acute Leukemia Advocates Network (ALAN)
VISION AND MISSION
Our vision is a world in which all leukemia patients have access to the best treatment, care and support available.
Our mission is:
1
To improve the lives and survival rates of patients affected by leukemia, as well as their relatives, worldwide
2
To support patient advocates in providing help and support to leukemia patients and their relatives
3
To provide a platform for education and best practice sharing of leukemia patient groups and their representatives worldwide
4
To collaborate with other stakeholders involved in research, treatment and care of patients with hematological cancers
OUR BOARD
The Foundation’s Board of Trustees supervises LEPAF, its activities, and its finances. It establishes legal representatives and committees, and represents the Foundation towards the public and Swiss authorities. The Board is ultimately responsible for ensuring compliance with all applicable laws and regulations.
LePAF’s four self-sustained global networks operate with a high degree of autonomy and are formally constituted as entities of the Foundation. This structure enables each network to pursue its own mission and activities independently, while remaining aligned with the Foundation’s overarching purpose and governance framework.
To ensure this alignment:
- At least one Trustee must be a member of every network steering committee.
- This Trustee holds a veto right over any committee decision that may contradict the Foundation’s rules, compromise its financial viability, or conflict with applicable laws and regulations.
The Leukemia Patient Advocates Foundation´s board is currently composed of the following trustees:
- Jana Pelouchová (President, Czech Republic)
- Jan Geißler (Vice President, Germany)
- Giora Sharf (Board Member, Israel)
- Erik Aerts (Board Member, Switzerland)
The Board of Trustees has recently appointed Samantha Nier (Switzerland) as Managing Director.
OUR NETWORKS
CML Advocates Network
The global CML Advocates Network (CMLAN) connects patient organisations in more than 90 countries on all continents. It was founded by four CML patient leaders from Germany, Israel, Czech Republic and UK and is led by a Steering Committee of nine CML patient advocates from all six world regions.
MPN Advocates Network
The global MPN Advocates Network (MPNAN) 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.
CLL Advocates Network
The CLL Advocates Network (CLLAN) is the global network of chronic lymphocytic leukaemia (CLL) patient groups. It was founded in 2014 by representatives from Canada, Czech Republic, France, Ireland, Italy, Portugal, UK and the United States. As a global network, the CLL Advocates Network’s mission is to enhance CLL patient care and improve patients’ outcomes.
Acute Leukemia Advocates Network (ALAN)
The Acute Leukemia Advocates Network (ALAN) is an independent global network of patient organisations representatives and patient organisations in the area of acute leukemias.