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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.

The CLL Advocates Network Steering Committee is pleased to announce that registration is open for the 6th International CLL Horizons Conference, taking place from 11–13 September 2025 in Krakow, Poland.

Building on the success of previous years, CLL Horizons 2025 promises to deliver an engaging, impactful experience for CLL advocates from around the world. The conference will run from Thursday afternoon to Saturday lunchtime, following our familiar format with several exciting updates.

Access to XXI iwCLL meeting included!
We are thrilled to share that your CLL Horizons registration now includes access to the main sessions of the XXI International Workshop on CLL (iwCLL), taking place in Krakow just after Horizons, from 12–15 September 2025.

This unique opportunity allows delegates to participate in both events during one trip, connecting with a broader audience of patient advocates, clinicians, researchers, and stakeholders from across the globe.

Register HERE for CLL Horizons to secure your place

Important note: The CLL Horizons conference scholarship DOES NOT cover extra hotel nights required for iwCLL. These costs will be the responsibility of the delegate or their organisation.

Eligibility Criteria:
To attend, you must:

• Be a member of the CLL Advocates Network, or have an active advocacy/support role within a patient organisation or group that supports CLL/SLL patients
• Be able to communicate in English

More information on the Scholarship Application, Conference Fee (if applicable), Travel Information, Visas, Venue & Accommodation, Call for Posters, and Abstract/Best Practice Session is available HERE.

We look forward to welcoming as many of you as possible to Krakow for this enriching and empowering global gathering of the CLL advocacy community.

We are proud to welcome a new member to our network! Please join us in welcoming our first Estonian member Eesti Leukeemia- ja Lümfoomihaigete Liit (ELLL), Estonian Leukaemia and Lymphoma Patients’ Societ to this big family!

The Estonian Leukaemia and Lymphoma Patients’ Society (ELLL) unites the patients, their carers and medical staff of the malignancies of the blood (i.e. leukaemias, lymphomas, myelomas and other myeloprolofic diseases). It represents > 20 members or patients with CLL.

To learn more about ELLL, please their profile in our members section.

The CLL Advocates Network now counts 45 members from 36 countries!

Click here to see our full list of members.

CLL Horizons, the annual conference of the CLL patient advocacy community, is designed to build capacity in patient advocates and grow their skills on medical and advocacy topics. The 4th CLL Horizons Conference (CLLHZ 2021) was held from 5-7 November 2021 in a fully virtual format. More than 130 participants from 40 countries joined the event.

Renowned experts and speakers from different parts of the world offered interesting medical and advocacy sessions, supporting interactive panel sessions.

Session recordings have been available to registered participants on the conference platform BUT ARE NOW ALSO AVAILABLE HERE!

For more information on CLL Horizons 2021 and to access sessions of previous Horizons Conferences, please CLICK HERE

This webinar is aimed at patients and advocates to provide an overview of latest developments in the treatment of CLL that were presented at The American Society of Haematology (ASH) Conference in Georgia, US, December 2021

We will be joined by:

• Dr Piers Patten – Consultant Haematologist and Senior Lecturer, Kings College Hospital NHS Foundation Trust

This webinar is scheduled for 10 February 2022 at 3:30 pm GMT / 16:30 CET and is being organised as a collaboration between the Chronic Lymphocytic Leukaemia Advocates Network and Leukaemia Care.

Please click here to register: https://us02web.zoom.us/webinar/register/WN_Gn_XT8nMRL6Y-Qy0Jsz-Lw

We are launching this new scribble video which explains what CLL is, what the typical signs and symptoms are, and why early diagnosis matters. The video is now available on our YouTube channel – check it out!