About
Mission & Objectives

What is CLLAN?

The CLL Advocates Network (CLLAN) was founded in 2014 by representatives from Canada, Czech Republic, France, Ireland, Italy, Portugal, UK and the United States. It is hosted under the umbrella of the Leukaemia Patient Advocates Foundation (LePAF), a patient-led non-profit foundation based in Switzerland acting as a legal platform for self-sustained patient advocacy initiatives. The CLL Advocates Network is governed by a Steering Committee consisting of the 7 members, of whom 6 are patients and 1 is a carer.

Why is CLLAN important?

  • CLL is the most common leukaemia in the Western world, with approximately 4 to 5 people in every 100,000 affected, but is poorly understood.
  • Many countries do not have a community or patient groups dedicated to supporting CLL patients.
  • A global network is indispensable to share knowledge, experience and best practices across countries, advocate for equitable standards of care and treatment standards and help improve patients´ understanding of clinical trials and the drug development process.

 

Mission

Improve CLL patient outcomes as a global network of CLL patient advocates.

 

Guiding Principles

  • Act as an international collective representative of CLL patient advocates
  • Develop tools to empower advocates to support their local CLL communities
  • Share best practices
  • Advocate for better care and access
  • Aid in the development of CLL specific support in all countries

 

Please note that individual support to patients and their loved ones remain in the scope of the national or regional advocacy associations and advocates.

Objectives

The objective of the CLLAN is to enhance CLL patient care by collaboratively:

  • Acting as an international collective representative of CLL patient groups, interacting with healthcare funding, treatment approval, and treatment research organisations to improve access to novel treatments globally.
  • Developing tools to empower patients to become advocates to influence policymakers and participate in HTA, R&D and clinical trial development.
  • Sharing best practices and resources between patient groups through annual meetings, education and a network website to improve CLL knowledge and awareness.
  • Ensuring every patient has access to quality resources and support by engaging existing patient organisations to become network members and provide guidance on patient organisation development in countries currently under-supported.

 

Disclaimer:
This website does not aim to provide information to medical professionals. The maintainers of this website have no medical qualifications and the information contained on this site is not intended to replace expert medical advice that you may be given. We do our best to ensure that any information we publish is accurate and strongly advise that any decisions about your treatment should be made after discussions with your haematologist or other suitably qualified medical professional.

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Get in touch for information about the CLL Advocates Network and membership.

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