The CLLAN Community Forum is a closed forum available by invitation to members of the CLL Advocates Network and participants of the 2019 CLL Horizons Conference. The CLL Advocates Network Forum is run by the volunteer steering committee. It is meant to be a place where other CLL advocates can communicate and share with each other. It is a private forum, open exclusively to the above mentioned target groups. Information on this site is meant for educational purposes only and is not meant to replace or give medical advice. We reserve the right to delete any post without explanation. No liability, explicit or implied, shall be extended to the owners or maintainers of this forum for messages posted to the forum.
We are open to suggestions about what our users want. It is your forum – let us know what improvements you would like to see!
Your CLL Advocates Network Team
What is CLLAN?
The CLL Advocates Network (CLLAN) was founded in 2014 by representatives from Canada, Czech Republic, France, Israel, Portugal, UK and the United States. The CLL Advocates Network Steering Committee now consists of 7 members, of whom 6 are patients and 1 is a carer.
The CLL Advocates Network (CLLAN) is hosted under the umbrella of LePAF (“Leukaemia Patient Advocates Foundation”), a patient-led non-profit foundation based in Switzerland. The Foundation acts as a legal platform for self-sustained patient advocacy initiatives.
A global network did not exist to share knowledge and experience or advocate for equitable standards of care. Many countries do not have community or patient groups dedicated to supporting CLL patients.
Improve CLL patient outcomes as a global network of CLL patient advocates.
The Guiding Principles of CLLAN
- 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 remains in the scope of the national or regional advocacy associations and advocates.
What is CLL?
Chronic lymphocytic leukemia (also called CLL) is a type of blood cancer in which the bone marrow makes too many B-lymphocytes (a type of white blood cell). CLL usually develops slowly and patients often enter a Watch and Wait or Active Observation stage before treatment is required. CLL is one of the most common types of leukemia in adults, with approximately 4 to 5 people in every 100,000 affected. It often occurs during or after middle age; it rarely occurs in children. Diagnosis is made through a blood sample and it is often found during routine blood work. CLL and SLL (small lymphocytic leukemia) are considered the same disease with different presentations and both are classified as B-cell Non Hodgkins Lymphomas as well as leukemias.