Every 1 September, the global CLL community unites to raise awareness about CHRONIC LYMPHOCYTIC LEUKEMIA (CLL) and give those affected by a diagnosis of CLL a much needed-voice. On World CLL Day we come together to improve understanding of the medical vulnerability of CLL patients and the challenges involved in living with CLL.
In 2025, WCLLD campaign focuses on strengthening health literacy, raising awareness, and empowering better decision-making. We are calling on stakeholders, healthcare professionals, industry leaders, patients and advocates to unite and amplify our message.
Together, we can:
Promote health literacy, CLL awareness and timely intervention
Empower patients to seek the knowledge to inform their choices
Foster a global community of support and advocacy
Main tagline: Understand, Decide, Thrive
Please spread the word and let other stakeholders and your clinical community know about World CLL Day and ask them for their active participation by building WCLLD into their communication plans!
For this year campaign updates and information of previous campaign themes please visit the World CLL Day page.
This 5-week online course is specifically designed for CLL, CML, Acute Leukemia, and MPN patient advocates and aims to empower you with the tools, communication techniques, and emotional insights needed to effectively support newly diagnosed patients and their families.
What will you learn? This course explores the emotional and psychological challenges newly diagnosed patients face and provides practical training in:
Understanding the patient and their family experience
Empathy, compassion, and communication principles
Listening skills and burnout prevention
Protocols for first interactions and ongoing support
Stress management for both patients and advocates
Best practices from experienced advocates
Watch & wait strategies and the power of language
The course begins on April 26 and runs until May 31, spanning a total of 5 weeks. It is delivered in English and requires a time commitment of approximately 7+ hours. Participants will also complete 2 video assignments as part of the course.
You can find detailed information about this course HERE.
The course is completely free of charge, but registration via registration form is required to enroll.
We highly recommend this course for anyone offering support to people living with CLL. This is a great opportunity to strengthen your advocacy skills, grow your confidence, and better serve our community.
CLLAN is a program partner and actively involved in course development.
A new patient guide from Johnson & Johnson, developed in collaboration with patient representatives from the CLL Advocates Network and with input from healthcare providers, is available now and offers, easily explained, much-needed and up to date support for people living with chronic lymphocytic leukaemia (CLL).
This digital resource focuses on Bruton’s tyrosine kinase inhibitors (BTKis) – a modern, targeted treatment that helps slow disease progression and improve quality of life.
BTKis may be used in the first-line or relapsed setting and can be given on their own or in combination with other anti-cancer medicines. They are usually taken once or twice daily as tablets for as long as the treatment is working. This guide explains how they work, what to expect during treatment, and how to manage side effects. It also highlights the importance of staying in touch with your healthcare team and caring for emotional wellbeing.
BTKi Treatment for CLL: A Patient Information Guide:
This resource will be useful for our member organisations to share with their patient community and will also offer value to individual patients with CLL and their care partners, who seek further information about BTKi treatments.
Clinicians are encouraged to share this guide with patients as a trusted resource that complements in-clinic discussions and helps individuals make informed decisions about their care.
CLL Horizons, the international conference of organisations representing people with CLL, is designed to build capacity in patient advocates and grow their skills on medical and advocacy topics. It is a unique opportunity for patient advocates and patient organisation representatives supporting CLL patients to:
Learn about the disease, treatments and latest research from leading doctors
Hear from fellow advocates on key topics, including awareness, education and drug access
Take part in sessions tailored to fit your organisation’s needs
Participate in the collaborative session between CLLAN and iwCLL (International Workshop on Chronic Lymphocytic Leukemia)
Meet and network with others doing similar work, giving them the opportunity to discuss issues facing CLL patients
Building on the success of previous conferences, we are now excited to announce that preparations for the 6th CLL Horizons Conference are underway. This will be a hybrid event offering those unable to travel a virtual opportunity to participate.
This year’s CLL Horizons will be hosted in Krakow, Poland, from 11–13 September. As with previous years, the event is designed to maximize collaboration opportunities between the CLL clinical research and patient advocacy communities. It will run alongside and partially overlap with the iwCLL – International Workshop on Chronic Lymphocytic Leukemia meeting.
Stay tuned for further details — the full agenda, conference registration, and logistics will soon be available on the CLLAN website. We’ll keep you updated with all the essential information to help you plan your participation in CLL Horizons 2025.
We are delighted to announce the pre-launch release of the global CLL Clinical Trials Hub, hosted by the CLL Advocates Network (CLLAN).
This innovative platform has been developed to simplify the process of discovering clinical trials for Chronic Lymphocytic Leukemia (CLL). It consolidates 30 different databases from a variety of countries. Search results give an overview of available clinical trials with a short description, recruitment status as well as inclusion and exclusion criteria. If more details are needed each result is linked to the source database where all available information about the respective clinical trial can be accessed. This includes locations, contact information and much more.
The Hub bas been designed to benefit patients, patient organisations, and healthcare providers alike. It serves as a vital resource for navigating available research opportunities. It is not intended as a substitute for medical consultation between patient and healthcare provider.
The CLL Advocates Network (CLLAN) Steering Committee successfully hosted the 5th International CLL Horizons Conference from September 27 to 29, 2024 in Barcelona, Spain.
This highly anticipated hybrid event brought together 85 delegates from 41 countries, along with virtual attendees, creating a truly global platform for discussion and collaboration on chronic lymphocytic leukemia (CLL).
For those who missed the event or wish to revisit key insights, recordings of all sessions are now available on the CLLANYouTube channel. The CLL Horizons 2024 playlist offers an opportunity for a wider audience to gain valuable knowledge and stay updated on the latest developments in CLL advocacy and treatment.
Medical Session: CLL diagnosis, active monitoring & associated dilemmas? Prof. Anna Schuh (UK)
Advocacy Session: 2023 Global Leukaemia Patient and Carer experience survey: CLL specific findings, report, unmet needs and prioritising recommendations for action Sarah Gunn (UK) & AJ Poots (UK)
Thank you all, and we look forward to continuing this journey together!
The Chronic Lymphocytic Leukaemia Advocates Network (CLLAN) conducted an analysis of the 2023 Global Leukemia Experience Survey data to examine diagnostic pathways, immunity status, and treatment decision experiences of people with CLL. The survey was a collaboration between Acute Leukemia Advocates Network (ALAN), CML Advocates Network (CMLAN) and CLLAN. It was released online in 13 languages to international respondents aged 18 or more, distributed via the advocacy networks.
It is well known that each diagnoses within the broader leukaemia classification face a varied diagnostic and treatment pathway, and ultimately for individuals, different challenges to navigate. We provide the key findings and implications for people with CLL, and outline the key findings and recommendations for clinicians and advocacy groups.
To access “2023 Global Leukemia Experience Survey: CLL specific findings, unmet needs and recommendations for action”CLICK HERE.
To access Full “Global Leukemia Experience Survey 2023 Report”CLICK HERE.
We wish to thank all those individuals that took the time to complete survey. This report is YOURS! Thank you for contributing to this important piece of evidence!
This hybrid event brought together 87 delegates from 40 countries to discuss chronic lymphocytic leukemia (CLL). The conference coincided with the ERIC New Frontiers in CLL conference, promoting collaboration between clinical and advocacy communities.
The 5th CLL Horizons Conference, organised by the CLL Advocates Network (CLLAN), was held in Barcelona, Spain, from September 27-29, 2024.
Eleven Key Opinion Leaders (KOLs) from hematology joined the Horizons faculty, sharing insights into the latest CLL treatments. Their participation facilitated valuable exchanges between clinicians and patient advocates, enhancing networking opportunities. Delegates shared their experiences in advocating for CLL patients, learning best practices, and exploring ways to improve patient support.
A key outcome was identifying unmet needs in Low- and Middle-Income Countries (LMICs). Delegates from these regions highlighted challenges in accessing treatment and care, and the need for tailored support systems. The conference spotlighted these issues and discussed potential solutions, fostering global solidarity and collaboration among stakeholders.
We are delighted to announce and warmly welcome Peter Haggert as the new Chair of the CLL Advocates Network (CLLAN). Peter brings with him a wealth of experience and a passionate commitment to advancing the cause of those affected by Chronic Lymphocytic Leukemia (CLL) and Small Lymphocytic Lymphoma (SLL).
Peter’s journey with CLL advocacy began unexpectedly in 2019 when he himself was diagnosed with CLL. Since then, he has dedicated himself to making a difference in the lives of others facing similar challenges. In his roles as Vice Chair and Treasurer of CLL Canada, he has been instrumental in enhancing education and improving healthcare access for Canadians affected by CLL/SLL. CLL Canada has seen significant growth in membership and influence, driven by impactful marketing initiatives and annual campaigns marking World CLL Day.
His participation at the Chronic Lymphocytic Leukemia national research meeting in Winnipeg underscored his commitment to advancing research and awareness globally. His active involvement in CLLAN activities culminated in his election as Chair in October 2024, a testament to his leadership and the trust placed in him by the CLL Advocates Network Steering Committee.
We also extend our heartfelt thanks to Nick York, who served diligently as Chair for many years and now assumes the honorary role of Chair Emeritus. His dedication and leadership have been invaluable in guiding CLLAN through significant milestones, and we deeply appreciate his continued support and wisdom. Nick remains an active member of the Steering Committee driving key projects for CLLAN.
Please join us in congratulating Peter on his new role and in supporting him as we continue our vital work in CLL advocacy.
As we wrap up CLL Horizons 2024, we reflect on an inspiring and collaborative final day filled with meaningful discussions, insights, and learnings. Sunday, 29th September marked the culmination of three powerful days, with a focus on critical topics in CLL care and advocacy, aiming to empower patients, caregivers, and professionals alike.
To relive the highlights of this engaging Day 3, don’t miss the video summary below.
Treatment Duration: Fixed vs Continuous Approaches The day began with a highly anticipated debate on treatment duration in CLL. Dr. Talha Munir (UK) and Professor William Wierda (US) discussed the scientific pros and cons of fixed versus continuous treatment. The session highlighted both medical perspectives and patient considerations, followed by a panel discussion chaired by Michael Rynne (Ireland) and Kathryn Huntley (Australia), which compared the goals of physicians and patients when it comes to treatment planning.
Shared Decision-Making in CLL Next, a session on Shared Decision Making took centre stage, exploring the intricate dynamics between healthcare professionals and patients. Professor Kostas Stamatopoulos (Greece) led two role-play scenarios, illustrating the challenges in communication, health literacy, and patient empowerment. A panel discussion followed, featuring insights from Dr. Christina Karamanidou (Greece), advocates Lorna Warwick (Canada), and Jan Rynne (Ireland), emphasising the importance of shared decision-making for improving patient outcomes.
Clinical Trials and Patient Involvement The importance of patient involvement in clinical research was addressed in the Medical & Advocacy Session on Clinical Studies and Trials. Dr. Talha Munir (UK) and Johannes Förner (Germany) discussed the evolving role of patients in clinical study development. The panel explored how empowering patients to engage with researchers can help build capacity and foster more patient-centred trials, bringing in perspectives from Professor Norah Akinola (Nigeria) and Felice Bombaci (Italy).
Management and Prevention of Infections in CLL The session on Management and Prevention of Infections focused on the critical unmet needs and best practices in infection control for CLL patients. Dr. Lydia Scarfo (Italy) delivered an insightful clinical update, followed by discussions on global collaborations, such as the International COVID-19 Blood Cancer Coalition (ICBCC) and the CLL Immune Challenges Taskforce, led by Nick York (UK) and Brian Koffman (US).
Best Poster Award & Closing Remarks The day concluded with the announcement of the Best Poster Award and heartfelt closing remarks from the CLLAN Steering Committee. As we closed out this year’s event, there was a palpable sense of unity and shared commitment to improving the lives of those affected by CLL.
A Warm Thank You to All We want to express our deepest gratitude to every speaker, delegate, and supporter who made CLL Horizons 2024 such a success. Your contributions have truly driven the rich discussions and impactful learning we’ve experienced over the past few days. Special thanks to our generous funders, including AstraZeneca, BeiGene, Lilly, ABBVIE, Johnson & Johnson, Takeda, the Leukemia & Lymphoma Society, and Nurix Therapeutics, whose support made this event possible.
Inspiring Community Engagement A huge thank you to everyone who actively participated in our WhatsApp chat throughout the conference. Your enthusiasm and sharing of ideas have been inspiring, and it’s been a joy to see the community come together in such a meaningful way. We look forward to continuing these conversations as we move forward.
Accessing Photos, Presentations, and Videos We’ll be capturing all the highlights and making the event photos, presentation videos, slides, and other materials available on our website in due course. Keep an eye out for an email update—we’ll notify you as soon as these resources are available online.
A Collaborative Day of Learning and Action As we bring CLL Horizons 2024 to a close, we leave inspired, united in purpose, and equipped with new knowledge to continue making a difference in the lives of CLL patients worldwide. The collaborations and connections formed over the past three days will have a lasting impact, and we look forward to the future with renewed hope and determination.
Thank you all, and we look forward to continuing this journey together!
We would like to thank the following for their event grant support:
