About ALAN

The Acute Leukemia Advocates Network (ALAN) is an independent global network of patient organisations, dedicated to changing outcomes of patients with acute leukemias by strengthening patient advocacy in that area. We aim to maximise the capacity of members within the network to allow us, together, to deliver tailored services to acute leukemia patients and carers on the national level. All whilst joining forces between organisations on the policy and research level across countries.

ALAN is hosted under the umbrella of the Leukemia Patient Advocates Foundation (LePAF), a patient-led non-profit foundation based in Switzerland. As a foundation we connect leukemia patient organizations on all continents to strengthen advocacy work. The 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.

OUR AIMS

  • Develop patient information and specific support for patients with acute leukemias and their carers in all countries
  • Strengthen patient organisations by sharing best practices and providing toolkits in patient advocacy
  • Create awareness about acute leukemias and how to better support leukemia patients
  • Advocate for better treatment, care & access to healthcare services
  • Collaborate with other initiatives and stakeholders with similar goals

HOW DO WE WORK ?

The Code of Conduct is based on the conviction that:

  • A strong collaboration between contributors of a multi-stakeholder project is likely to generate benefits for all parties involved.
  • The integrity, credibility, and independence of all involved contributors, as well as the constraints and obligations under which all contributors operate, should be respected at all times.
  • A collaboration in which the integrity and credibility of all parties concerned are upheld should be underpinned by core principles and values.
  • The perspective of patients and patient advocates is unique in nature and therefore should be valued as specialist knowledge and complementary to knowledge of other experts, academia and industry.

ALAN Code of Conduct and Ethical Framework – Final – September 2023

The Code of Practice outlines the working culture between ALAN and pharmaceutical industry:

ALAN Code of Practice – Final – September 2023