Day 3 – Saturday, September 13 (Thrive)

The final day of CLL Horizons 2025 centered on the theme of Thrive, shifting attention toward resilience, sustainability, and the future of CLL care.

The morning began with a satellite symposium that outlined a set of consensus principles for improving care, emphasizing the shared responsibility across healthcare providers, advocates, and patients themselves. From there, the day moved into sessions designed to strengthen the advocates who support the CLL community every day.

Balancing the demands of advocacy with personal well-being was a central theme. Discussions acknowledged the emotional toll that comes with advocacy—whether through lived experience of illness or exposure to the challenges faced by others—and explored strategies for self-care and resilience. Participants shared perspectives on how to establish boundaries, sustain motivation, and protect their energy while continuing to lead change.

Equally powerful was the focus on connection. A session dedicated to storytelling highlighted the transformative effect of shared experiences, demonstrating how communities of advocates and patients can support one another while amplifying their collective voice.

The global nature of the conference was on full display in sessions that showcased advocacy best practices from across continents. From grassroots initiatives to system-level reforms, these stories highlighted how local action can inspire international progress.

The closing session looked forward, exploring innovations in CLL research and treatment. Participants were introduced to new developments on the horizon, offering both hope and concrete insights into how care is evolving.

The conference ended with recognition of the best poster presentation and a farewell lunch, giving participants one final opportunity to reflect on what they had learned and to celebrate the friendships and collaborations forged over three days.

As delegates departed Krakow, the overarching message of the conference was clear: through understanding, informed decision-making, and resilience, the global CLL community is not just surviving—it is thriving.

We would like to thank the following for their event grant support:

The second day of the conference focused on the theme of Decide, highlighting the vital role of information and communication in empowering patients to make confident choices about their care.

The morning began with a satellite symposium on closing the communication gap between patients and healthcare professionals during active monitoring. This discussion set the tone for a day dedicated to shared decision-making and health literacy. One of the strongest takeaways was the reminder that delivering clear, compassionate, and balanced information is not just a courtesy but a cornerstone of quality care.

Health literacy emerged as another critical issue. Sessions unpacked how complex medical language can create barriers to understanding, and how advocates and clinicians can work together to bridge this gap. Practical strategies—such as simplifying terminology, tailoring information, and using inclusive communication—were shared as ways to give patients clarity and confidence in navigating their care journeys.

The late morning breakouts offered hands-on learning for advocacy organizations. Larger groups explored strategies for fundraising at scale and smarter resource allocation, while smaller organizations focused on simple but high-impact methods to stretch limited budgets. These sessions reflected the diversity of advocacy organizations worldwide and reinforced the importance of equipping each with tools suited to their size and context.

In the afternoon, participants joined colleagues from the iwCLL conference for a joint session that underscored the importance of collaboration across research and advocacy. Discussions centered on immune-related challenges in CLL, gaps between clinical evidence and real-world patient experience, and new initiatives to tackle these issues collectively. Another session highlighted the growing role of patients in research design, showcasing how partnerships between scientists and patient advocates can lead to more effective and inclusive clinical trials.

The day closed with a cultural highlight: a guided walk through Krakow leading to a reception at Wawel Castle. This setting provided the perfect backdrop for participants to continue conversations and deepen connections, blending the scientific with the social in a memorable evening.

We would like to thank the following for their event grant support:

Dear Friends of the CLL Advocates Network,

As we get closer to the CLL Horizons Conference (11–13 September 2025), we are pleased to announce that virtual participation via Zoom will be available, enabling advocates worldwide to connect, learn, and thrive together.

Event Details:
📅 Date: 11–13 September 2025
💻 Registration link: https://eu01web.zoom.us/meeting/register/MEvfwiznRSKbgVFNHC8S3A
🎯 Theme: Understand, Decide, Thrive

This year’s program is aligned with World CLL Day 2025 and brings together a distinguished faculty of clinical experts and advocacy leaders. Sessions will enhance foundational knowledge, support informed decision-making, and provide tools for sustainable, long-term advocacy and well-being.

From plenary sessions such as “CLLAN in Action: Global Updates and What’s Next” to thought-provoking panels on quality of life, patient voice, communication, and resilience, participants can look forward to an agenda rich in both knowledge and inspiration.

We invite you to register today and secure your virtual place at this global gathering.

With kind regards,
CLLAN

Hear from a patient living with Chronic Lymphocytic Leukaemia and learn about their experiences with ‘active monitoring’.

Hear hematologist, Dr. Ben Kennedy, on how to support CLL patients on active monitoring

Experts discuss the challenges patients with CLL on active monitoring face and the recommendations made in the Call-to-Action report

Read the Call-To-Action HERE

Globally, incidence of Chronic Lymphocytic Leukaemia (CLL) is on the rise [1]. With survival rates significantly improving over the past two decades, more patients will face prolonged periods of ‘watch and wait’ or ‘active monitoring’ [2]. All too many patients report not fully understanding the rationale behind active monitoring and often turn to unreliable external sources of information.  Lack of credible information and an absence of universal structured support from medical professionals adds additional fear and anxiety.

To address the challenges faced by patients with CLL who undergo active monitoring, a call-to-action was initiated by BeOne and supported by Patvocates, CLL Advocates Network (CLLAN) and the CLL community. This call to action emerged from two workshops where patients, care partners, patient advocates and health care practitioners (HCPs) convened to discuss areas of unmet needs.

Three critical areas were identified:  

1. Enhancing Healthcare Provider (HCP)-Patient Communication

• Insights from the patient community found that many multidisciplinary teams (MDTs) lacked internal co-ordination, and communication about active monitoring was fragmented and inconsistent. Based on these findings it is crucial to develop HCP training, prioritise active listening and consistent messaging within MDTs.

2. Improving Access to Trustworthy Information

• Patients in the active monitoring stage describe it as a time of ‘wait and worry’, highlighting the importance of access to credible information and the psychological burden a lack of access can cause[3]. Access to the latest, evidence-based information could improve patient anxiety.

3. Strengthening Peer Support and Patient Organisation Engagement

• There is a frustration among patients at the lack of support provided during active monitoring in the form of peer support programmes, digital or paper monitoring tools. It is essential for HCPs to take an active role in patient referral and for continuous collaboration between patient organisations and MDTs to occur.

The Call-to-Action: We call on all those who can make a difference – including healthcare providers, patient organisations, policymakers, medical societies and industry – to join forces and drive for change to improve the lives of patients with CLL – CTA Report Link (Download PDF/Read online) #NavigatingCLLTogether

References:

1. Ou, Y., Long, Y., Ji, L., Zhan, Y., Qiao, T., Wang, X., Chen, H. and Cheng, Y., 2022. Trends in disease burden of chronic lymphocytic leukemia at the global, regional, and national levels from 1990 to 2019, and projections until 2030: a population-based epidemiologic study. Frontiers in Oncology, 12, p.840616.
2. CLL Advocates, 2025. Insights from the 2023 Global Leukemia Experience Survey: CLL-specific findings, unmet needs, and recommendations for action. Available at: https://www.clladvocates.net/wp-content/uploads/2025/01/Insights-from-the-2023-Global-LeukemiaExperience-Survey-CLL-specific-findings-unmet-needs-and-recommendations-for-action.pdf [Accessed 23 April 2025].
3. Dunnion, C., Giltenane, M. and Dowling, M., 2023. The ‘inbetweeners’: living on a watch and wait approach for chronic lymphocytic leukaemia – a qualitative study. British Journal of Nursing, 32(16), pp.794-800.

We are pleased to share the findings from the 2024 CLL Advocacy Survey, which gathered perspectives from 55 organisations across 42 countries to better understand the unmet needs, challenges, and priorities of the CLL advocacy community.

The survey highlights:

• High engagement with CLLAN resources – 89% of organisations use at least one, most commonly the CLLAN website and World CLL Day campaign materials.
• Top priorities for new resources – medical updates on CLL, patient education, advocacy, access to treatment and diagnostics, and patient support.
• Barriers to service delivery – insufficient financial and human resources remain the leading challenges, especially for organisations in low- and middle-income countries.
• Healthcare access inequities – delayed diagnosis and limited clinical trial access are reported far more often in LMICs compared to HICs.
• Changing landscape post-COVID-19 – more organisations are investing in online education and advocacy, while demand for personal advocacy and emotional support continues to grow.

These findings will guide future priorities for CLLAN and the wider CLL advocacy network, ensuring that resources, collaboration, and advocacy efforts meet the evolving needs of patients and caregivers worldwide.

👉 Access the Executive Summary here

Thank you to all the organisations who took part in the 2024 CLL Advocacy Survey. Your insights are invaluable in shaping stronger support, better resources, and improved care for people living with CLL worldwide.

A major new international report, Global CLL Community Insights: How Stakeholders Can Collaborate to Improve Care, has been published, shedding light on the pressing physical, emotional, and informational challenges faced by people living with chronic lymphocytic leukaemia (CLL) and their care partners.

Drawing on survey data from 18 countries, the report calls for closer collaboration between patients, healthcare professionals, and advocacy organisations to improve communication, strengthen decision-making, and enhance quality of life.

Key Findings

• Emotional and physical impact: Fatigue, infections, anaemia, and anxiety are among the most common burdens, with two-thirds of patients reporting heightened anxiety since diagnosis.
• Information gaps: Nearly half of patients do not receive written information at diagnosis, leaving many without clear guidance.
• Decision-making shortfalls: Although most patients want to be active in treatment decisions, many are not presented with more than one option.

Recommendations

The report highlights four priority actions for better care: addressing both physical and emotional needs, proactive engagement with patients, multidisciplinary care approaches, and empowering patients through shared decision-making.

By placing patients and care partners at the centre of decisions, the report emphasises that CLL care can become more supportive, effective, and empowering.

👉 Read the full report: Global CLL Community Insights

This report was developed and funded by AbbVie, in partnership with CLLAN (CLL Advocates Network), leveraging insights from the global CLL patient and care partner community.