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!
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:
The second day of CLL Horizons 2024 began with a sense of excitement as attendees looked forward to diving into advocacy best practices and gaining medical insights from experts around the world. The day was designed to empower patient advocates and offer participants the tools and knowledge to advance CLL treatment and support efforts globally.
To relive the highlights of this engaging day, don’t miss the Day 2 video summary below.
Morning Sessions: Showcasing Global Advocacy Initiatives The morning began with Advocacy Session #2, showcasing global initiatives from around the world. Chaired by Jana Pelouchova (CZ) and Jennifer Wilson (US), these sessions highlighted best practices in CLL advocacy from organisations like the Brazilian Lymphoma and Leukemia Association (ABRALE), presented by Catherine Moura (BR), and CLL Support UK, with a presentation by John Greensmyth (UK). Other key contributions came from advocates such as Georgi Georgiev from the Bulgarian Lymphoma Association, Ron Moskovitch from Israel’s Flute of Light, and Aleksandra Mladenovic from Serbia’s Lymphoma Patient Association (LIPA).
Advocacy Workshops: Hands-on Learning and Strategy Development In the second part of the morning, attendees split into small group workshops to dive into specific topics around advocacy:
Workshop 1: Supporting People Affected by a CLL Diagnosis Facilitators: Jennifer Wilson (US), Jana Pelouchova (CZ), John Greensmyth (UK), Catherine Moura (BR), Deborah Henderson (AU), Lea Koren (IL) This workshop explored best practices for service delivery, highlighting practical examples and strategies to overcome barriers in patient support.
Workshop 2: Diversity, Equity, and Inclusion (DEI) Principles in Cancer Care and Research In Breakout Room Cloud 1+2, facilitators Jan Rynne (IE) and Khullat Munir (DE) guided participants through the relevance of DEI in healthcare, exploring what makes communities diverse, why DEI is crucial for clinical research and care, and how to overcome barriers to inclusion.
Workshop 3: Optimising CLL Clinical Trials Information Facilitators: Johannes Förner (DE), Nick York (UK), Mirna Tomasevic (HR) This workshop addressed the CLLAN CLL clinical trials search facility and provided guidance on understanding clinical trials information and its importance for patient advocacy.
Workshop 3 (take 2 & 3): Communications Policy and Implementation Facilitators: Alfonso Aguarón (ES), Mirna Tomasevic (HR), Peter Haggert (CA) This session focused on the development of effective digital communication strategies for advocacy. Participants discussed how to determine what is right for their organisation or campaign, as well as how to implement strategies using different communication channels.
Medical Session #1: The Current Treatment Landscape of CLL After a quick lunch break, attention shifted to Medical Session #1, chaired by Brian Koffman (US) and Michael Rynne (IE). This session gave attendees a comprehensive update on the latest developments in CLL treatment. Professor Florence Cymbalista (FR) presented on 1st line treatment, and Dr. Miguel Pavlovsky (AR) discussed strategies for re-treatment. A stimulating panel discussion followed, focused on the challenges of treatment sequencing for CLL.
Advocacy Session #4: Turning Evidence into Action The afternoon Advocacy Session led by Nick York (UK) and Kathryn Huntley (AU) delved into the results of the 2023 Global Leukemia Patient and Carer Experience Survey, revealing key unmet needs in the CLL community. The session also introduced the launch of the CLLAN 2024 Global CLL Advocacy Survey. The goal of these discussions was to encourage collaboration and translate these findings into real-world actions, particularly through the creation of the CLL Treatment Compass.
Medical Sessions #2 and #3: Managing CLL in LMICs and Exploring New Frontiers The day ended with two essential medical sessions:
Medical Session #2: CLL Management in Low- and Middle-Income Countries (LMICs) Speakers discussed the specific challenges of treating CLL in LMICs, including local practice needs and the roll-out of precision medicine in these regions.
Medical Session #3: New Frontiers in CLL Treatment Speakers shared the latest advancements in MRD-guided management and next-generation treatments, offering a forward-looking view of CLL care and new treatment targets.
A Collaborative Day of Learning and Action As Day 2 concluded, attendees left inspired and equipped with new knowledge, ready to take action and continue advocating for better CLL treatment and support across the globe. The collaborative spirit of the day fostered a deep exchange of ideas and strengthened connections between participants, paving the way for future progress in the CLL community.
We would like to thank the following for their event grant support:
The first day of CLL Horizons 2024 began at noon with a warm Opening Lunch on the Evolution Terrace, where participants were welcomed by the event team. Over lunch, attendees were introduced to the structure of the conference and received guidance on navigating the sessions ahead.
Don’t miss the highlights! View our 2-minute video recap below.
Workshops: Building Advocacy and Clinical Knowledge After lunch, the conference moved into three workshops, designed to provide essential skills for advocacy and clinical trial navigation. The workshops were held concurrently and repeated, allowing participants to attend multiple sessions:
1. Evidence Generation to Inform Advocacy Initiatives Facilitators: Sarah Gunn & AJ Poots (Picker UK), Kathryn Huntley (AU), Felice Bombaci (IT) Participants gained practical skills in collecting qualitative and quantitative data to support advocacy efforts. They also explored survey design and learned how to interpret and report data for evidence-based patient advocacy.
2. Optimising CLL Clinical Trials Information & Directories Facilitators: Johannes Förner (DE), Mirna Tomasevic (HR) This session introduced the new CLLAN clinical trials search facility and provided strategies to better understand and navigate clinical trials data to meet patient needs.
3. Blood Cancer Patient Advocates Academy – Turning Theory into Practice Facilitators: Denis Costello (ES), Jan Rynne (IE), Peter Haggert (CA), Vandana Gupta (IN) Participants discussed the current curriculum and platform for advocate education, as well as additional tools that could enhance capacity-building in CLL patient advocacy.
CLL 101: A Dynamic Landscape One of the key highlights of Day 1 was the CLL 101 Session, which provided participants with a foundational understanding of chronic lymphocytic leukaemia (CLL). Topics included epidemiology, diagnosis, disease progression, and treatment options. Speakers Lorna Warwick (CA), Pierre Aumont (FR), and Michael Rynne (IE), supported by clinical expert Professor Anna Schuh (UK), led an engaging presentation. The session included a discussion to prepare participants for more advanced topics over the weekend.
CLL Horizons 2024 Grand Opening: A 10-Year Celebration The afternoon saw the official Grand Opening of CLL Horizons 2024, where Nick York (UK) and the CLL Advocates Network (CLLAN) Steering Committee and project leads reflected on the network’s 10-year journey. Milestones and successes were shared, along with updates on CLLAN’s strategic plan and upcoming initiatives, setting the stage for the next few days of learning and collaboration.
Medical and Advocacy Joint Session: Dilemmas in CLL Diagnosis and Active Monitoring Later in the day, attendees gathered for a Medical and Advocacy Joint Session, chaired by Deborah Henderson (AU) and Peter Haggert (CA). Professor Anna Schuh (UK) presented on the complexities of CLL diagnosis, active monitoring, and prognostic tools, followed by a discussion on the potential for personalised approaches in CLL care. Next, Helen Knight and Lianne Palmer (UK) delivered a virtual session on supportive and holistic care, which covered key topics such as immunisation and health strategies for improving patient well-being. The session concluded with a panel discussion moderated by Professor Schuh, featuring Brian Koffman (US), Pierre Aumont (FR), and Peter Haggert (CA), where they tackled the emotional impact of the “watch and wait” period in CLL care.
Poster Presentation and Networking The day closed with a Poster Presentation Session and networking in the Evolution Foyer. Attendees explored the latest advocacy projects while engaging in discussions and building connections.
Dinner and Discussions The evening wrapped up with a group dinner at Restaurante Merkado, where participants continued their conversations in a relaxed setting, strengthening the relationships formed throughout the day.
WhatsApp Group Everyone’s been fantastic sharing photo’s and networking, THANK YOU, keep it going.
Day 1 of CLL Horizons 2024 left us inspired and energised by the wealth of knowledge shared, the robust discussions that took place, and the connections forged among participants.
We would like to thank the following for their event grant support:
The CLL Advocates Network (CLLAN) Steering Committee is thrilled to announce the return of our highly anticipated in-person event after the pandemic hiatus. Our 5th conference promises a blend of in-person and virtual experiences scheduled for 27th – 29th September in Barcelona, Spain.
Faculty and Speakers: The conference faculty of esteemed speakers and moderators have been selected to include leading advocates and clinical experts speakers from around the globe, ensuring representation and sharing of expertise and information relevant to advocacy and CLL support developments in all countries. The clinical faculty of expert speakers include: Prof Anna Schuh (UK), Prof Arnon Kater (NL), Prof Barbara Eichhorst (DE), Prof Florence Cymbalista (FR), Prof Norah Akinola (NG), Dr Miguel Pavlovsky (AR), Prof Kostas Stamatopoulos (EL), Prof Paolo Ghia (IT), Dr Lydia Scarfo (IT), Prof Tahla Munir (UK), Prof William Wierda (US) and Dr Christina Karamanidou (EL).
Contact Information: For any questions or assistance, feel free to reach out to CLL Horizons 2024 team at: CLLHZ@clladvocates.net
Warm regards, Nick York, Chair of CLL Advocates Network on behalf of the CLLAN Steering Committee
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 vulnerability of CLL patients and the challenges involved in living with CLL.
Advocacy groups, the medical community and patients have all joined this campaign in previous years and we would like to see the reach extended further than ever before. This year’s theme is Level Up – our pitch to ensure those with CLL get the same attention care and the same opportunities for treatment as those with other types of cancer. But ‘leveling up’ may mean something different for you and your organisation. Perhaps you are concerned with an inequity locally, specific to your region. You can choose from the assets provided to shape your own campaign. Different organisations in different countries may see a need to ‘level up’ in different ways. We encourage all stakeholders to get onboard and make this about their greatest need.
The full campaign toolkit is underway and will be available on www.wclld.org soon, aiming to make your participation seamless and smooth.
Let’s come together and raise awareness of the issues affecting our patient community. Let’s seek out equity and equality for those who need it. Let’s Level UP!!!!
We are proud to welcome a new member to our network! Please join us in welcoming Henzo Kenya, our first member from Kenya!
HENZO KENYA, is a Community Based Organisation Registered in Kenya. It brings together about 1,500 cancer patients for awareness, mutual support and advocacy. Most of the patients (about 80%, are on treatment for Chronic Myeloid Leukemia (CML) and the rest are being treated for Gastro-intestinal stromal tumors (GIST), other types of Leukemias (CLL and Acute Leukemias), Lymphomas and Myelomas. The patients are drawn from all over the country.
Their Mission is: To create awareness about Hematological malignancies and GIST, provide emotional and social support to members and to advocate for mainstreaming of issues related to these diseases that affect patients, and general public; with a Vision to be the hub of information, psycho social and emotional support for Cancer patients and a key advocate for the same.
DATE: 27th – 29th September 2024 LOCATION: Barcelona, Spain
The CLL Advocates Network (CLLAN) Steering Committee is pleased to announce the 5th International CLL Horizons Conference, a hybrid event scheduled for 27th – 29th September in the stunning city of Barcelona, Spain.
The CLL Advocates Network (CLLAN) Steering Committee is thrilled to announce the return of our highly anticipated in-person event after the pandemic hiatus. Our 5th conference promises a blend of in-person and virtual experiences, offering the dynamic setting of Barcelona, Spain.
What to Expect: Comprehensive Workshops and Sessions:
Engage in a variety of foundational learning and advocacy workshops tailored to enhance your skills and knowledge. Participate in sessions on evidence generation, digital communication strategies, and the Leukemia Patient Advocates Academy.
Expert-led Medical Discussions:
Join comprehensive medical sessions led by leading hematologists, supportive care specialists and HCP’s
Explore topics such as CLL diagnosis, active monitoring, personalised treatment approaches, and the latest study information.
Engage in panel discussions on the current treatment landscape of CLL, including first-line treatments, re-treatment options, and new frontiers in CLL.
Networking and Social Events:
Connect with fellow advocates, experts, and professionals during networking sessions and social gatherings.
Attend the CLL Horizons 2024 Grand Opening, featuring welcome remarks, a 10-year anniversary reflection, and updates on CLLAN projects and strategic plans.
Join us for a dedicated poster presentation session, providing an opportunity to explore innovative research and projects presented by your peers.
Engage with the presenters during the networking time, ask questions, and discuss the implications of their findings on patient advocacy and care.
This session is an excellent opportunity to gain new perspectives, exchange ideas, and foster collaborations with other advocates and experts in the field.
Best Practices, Call to Action, and Poster Presentation:
Best Practices Session:
Participate in the Best Practice session where we will showcase your CLL support & advocacy initiative topics/examples.
We invite you to submit your abstracts by the end of July to be considered for presentation during this session.
We encourage you to utilise this template for your submissions.
Hybrid Experience: Choose to attend in person in Barcelona or virtually from your home. Network with CLL advocacy leaders worldwide, exchange ideas, and form collaborations that transcend borders, contributing to the success of your organisation.
Faculty and Speakers: The conference faculty of esteemed speakers and moderators have been selected to include leading advocates and clinical experts speakers from around the globe, ensuring representation and sharing of expertise and information relevant to advocacy and CLL support developments in all countries. The clinical faculty of expert speakers include: Prof Anna Schuh (UK), Prof Arnon Kater (NL), Prof Barbara Eichhorst (DE), Prof Florence Cymbalista (FR), Prof Norah Akinola (NG), Dr Miguel Pavlovsky (AR), Prof Kostas Stamatopoulos (EL), Prof Paolo Ghia (IT), Dr Lydia Scarfo (IT), Prof Tahla Munir (UK), Prof William Wierda (US) and Dr Christina Karamanidou (EL).
You are a member of CLL Advocates Network or have an active role in advocacy/support within a patient organisation/group that supports patients with CLL/SLL
You are able to communicate in English
Registration for the International CLL Horizons Conference will be available for up to two participants per organisation.
First Delegate: A full scholarship will be provided for the first delegate from the patient organisation who meets the eligibility criteria. The scholarship covers: accommodation, flights and transfers, catering, delegate conference pass and attendance.
Second Delegate: For a second delegate, the conference fee is 500 EUR. This will be waived upon submission of a best practise poster abstract. The conference fee covers: accommodation, catering, delegate conference pass and attendance. Second delegate travel costs are not included.
You can find more details about the Scholarship Application HERE.
Registration: Secure your spot at this exceptional event by registering early. Visit our website www.clladvocates.net/cll-horizons-2024/ for further details and more information.
Important Visa Information: Spain is part of the EU and requires a Schengen Visa. If you need a visa, kindly complete your registration by 15th July 2024. This early registration deadline is crucial for timely visa appointments and document processing. You can find more details about the visa application HERE.
Contact Information: For any questions or assistance, feel free to reach out to CLL Horizons 2024 team at: CLLHZ@clladvocates.net
We eagerly anticipate the opportunity to meet as many of you as possible in Barcelona, for an enriching and educative experience.
Warm regards, Nick York, Chair of CLL Advocates Network on behalf of the CLLAN Steering Committee
The CLL Advocates Network (CLLAN) is proud to announce that it is setting up a new community-led initiative to address the immune challenges people living with chronic lymphocytic leukaemia (CLL) face.
The first step towards this new initiative is a series of workshops to be held in early July 2024. These workshops will offer a unique platform for stakeholders from CLL clinical and advocacy communities worldwide to come together develop a clear, shared vision for this new initiative and identify practical policy recommendations for the group to drive forward.
This initiative is multi sponsored and grant funded currently by two funders, AstraZeneca and Takeda. CLLAN is interested in securing funding from additional industry partners for future phases of this initiative, please get in touch if you would like to learn more.
CLLAN is excited to bring together the global CLL community and drive real change for people living with immune challenges and CLL. More information will be published on the outcomes of these workshops and the launch of this new community-led initiative.
Together, we can overcome immune challenges and enhance the quality of life for all people affected by CLL
The CLL Advocates Network (CLLAN) Steering Committee are pleased to announce the 5th International CLL Horizons Conference, a hybrid event scheduled for 27th – 29th September in the stunning city of Barcelona, Spain. Save these dates in your diaries!
The CLL Horizons Conference 2024 has been strategically coordinated to overlap with the ERIC International Meeting, New Frontiers in CLL Research, also in Barcelona. This alignment opens doors to enhanced networking, educational opportunities, and the cultivation of collaborative endeavours between the global CLL clinical and advocacy communities.
The CLL Horizons Conference is a unique opportunity for CLLAN member organisation representatives and patient advocacy representatives from patient organisations supporting people with a CLL diagnosis to:
Learn about the disease, treatments and cutting-edge research presented by top clinicians;
Engage with fellow advocates on crucial subjects such as awareness, education, and access to treatments;
Connect and collaborate with other advocates from around the world to address the challenges encountered by CLL patients;
Attendees will gain important knowledge that will help them improve their capacity to support CLL patients in their communities.
We invite you to express your interest in participating in CLL Horizons 2024, either virtually or in person, by completing the pre-registration form.
1st Advocate delegate– If your registration and place is approved, CLLAN will provide full scholarship support for your organization’s 1st patient advocacy delegate. This includes:
Conference registration, accommodation (up to 3 nights in a single room) and catering.
Economy flights or other cost-effective travel to Barcelona, Spain. Delegates may choose to book their flights independently. CLLAN will reimburse up to the equivalent of €400 for delegates traveling within Europe and up to €900 for those traveling intercontinentally. Delegates may also choose to book their flights through CLLAN’s associated travel agent.
Transport from the airport to the conference venue.
Delegates are responsible for obtaining their own visas (if needed).
2nd Advocate delegate – If you would like to register interest for a 2nd delegate from your organisation to attend Horizons, their costs for flights to Barcelona and a conference attendance fee of €500 will be necessary to secure one of the limited 2nd spaces available. The conference fee offers subsidised cover for delegate attendance, catering and hotel accommodation (to a maximum of 3 nights in a single room). A limited number of scholarships to cover 2nd delegate costs are available on application.
The CLLAN Steering Committee is working hard to ensure that the conference includes topics of importance to the CLL patient community and provides a unique opportunity for participants to share experiences and best practice.
Stay tuned for further details: full agenda and logistics will be available soon HERE. We will keep you updated with all the necessary information to plan your participation in CLLHZ24.
