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Advocacy Working Group

We recognise that receiving a CLL diagnosis is scary and finding accessibleinformation on CLL can be challenging. The Advocacy Working Group are committed to supporting people living with CLL and immune challenges as well as their family and carers to understand how they can adapt to their new normal andlive healthy and full lives. The educational resources developed by the WorkingGroup are informed by the lived experiences of patients, advocates, carers andleading clinical experts around the world.

Mission and objectives

Mission

To inform, educate and support people living with CLL and immune challenges and their carers.

Objective

To create a suite of accessible educational resources focusing on(positive/negative) quality of life and the ‘new normal’ for people living with CLL and immune challenges.

Key deliverables

Across 2025 and 2026, the Advocacy Working Group will develop three educational resources. These resources are available in English and will be translated into additional languages and made available on this page. The first educational resource focuses on preventing and managing infections, offering practical information on strategies to prevent and cope with an infection as someone living with a weaker immune system, to support a full and active life withCLL. This resource is intended to complement – not replace – advice from your healthcare team. Please speak to your healthcare team to create a personal plan forpreventing and managing infections. It is now available for download:

• English
• Arabic – coming soon
• Chinese (simplified) – coming soon
• French – coming soon
•  Hindi – coming soon
•  Portuguese – coming soon
• Spanish – coming soon
• Swahili – coming soon

Timeline and milestones

Each resource is developed in consultation with all members of the Working Group. Members of the Operational Committee also review each resource to ensure itmeets the requirements of the Task Force’s key principles. The Working Group held the first virtual meeting in July 2025. Two additional meetings will take place in 2026. In between meetings, members will contribute to the development of resources with input offline.

Members of the Advocacy Working Group

Co-chairs

• Prof. Stephen Opat: Director, Clinical Haematology, Monash Health;Founder & chair, Australasian Lymphoma and Related Diseases Registry
• Jana Pelouchova: Founder and Chair, Diagnoza Leukemia

Members

• Raymond Vles: Chair of Board, CLL Canada
• John Greensmyth: Deputy Chair, CLL Support UK
• Rita Christensen: Chairperson, LyLe
• Jennifer Wilson: Senior Information Specialist, Blood Cancer United andCLLAN Steering Committee Member
• Pierre Aumont: Administrator, ELLyE and Member and Vice Chair, CLLANSteering Committee
• Jenny Zhang: House086
• Michael Rynne: Patient Advocate, CLL Ireland
• Bahija Gouimi: President, Association des Malades Atteints de Leucémies (AMAL)
• Vandana Gupta: Founder, V Care Foundation
• Apendavyo Mshana: Founder, CLL Patient Support Group Tanzania and Executive Secretary, Blood Cancer Foundation Tanzania
• Dr Brian Koffman: Chief Medical Officer and Executive Vice President, CLLSociety Inc. and CLLAN Steering Committee Member
• Deborah Henderson: Director, Henderson Media Group
• Dr Catherine Moura: CEO, Abrale – Brazilian Lymphoma and LeukemiaAssociation and Abrasta – Brazilian Association of Thalassaemia
• Prof Norah O. Akinola, FACP: Haematologist, Department of Haematologyand Blood Transfusion, Obafemi Awolowo University and Teaching HospitalsComplex, Ile-Ife
• Dr Christina Karamanidou: Postdoctoral Researcher, ERIC CERTH-INAB
• Natacha Bolaños: Head, Membership & Alliances, Lymphoma Coalition
• Megan Yuan: AstraZeneca
• Helena Hjertonsson: Takeda
•  Jenni Mildon: Johnson&Johnson

For specific queries, please contact: CLLICTaskforce@mhpgroup.com