Author: Nicole [Germany]

How do I prepare for an event knowing the high number of immune compromised individuals at the event? What are the best practices for cleanliness? How do we prepare volunteers and support staff?

These questions and more are answered by a new International COVID-19 Blood Cancer Coalition (ICBCC) report.

Good-Practice Guidelines on Face-to-Face Events for Immunocompromised Patients:

Digital version here

For more on the ICBCC visit here

The International COVID-19 Blood Cancer Coalition (ICBCC) is a multi-stakeholder coalition led by representatives of the global patient advocacy and clinical community in haemato-oncology. The coalition was formed in 2021 to address the specific impact of COVID-19 on immunocompromised blood cancer patients.

The ICBCC is re-examining its mandate this year, most likely broadening its scope to other viral infectious diseases.

These guidelines are intended as considerations and practical recommendations to support safer, more inclusive face-to-face events where immunocompromised people may be present.

Infection Prevention and Management

We recognise that receiving a CLL diagnosis is scary and finding accessible information on CLL can be challenging. The Advocacy Working Group of the CLL IC Task Force, spearheaded by CLLAN, is 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 and live healthy and full lives. Theis educational resource is informed by the lived experiences of patients, advocates, carers and leading clinical experts around the world.

Across 2025 and 2026, the CLL IC Task Force 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.

This, 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 with CLL.

This resource is intended to complement – not replace – advice from your healthcare team. Please speak to your healthcare team to create a personal plan for preventing and managing infections. It is now available for download:

Navigating Immune Challenges in CLL: Infection Prevention and Management

🔗  Download Digital version HERE

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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 infections and CLL.

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.

We are pleased to announce that the long-awaited Survey Comparison Report “CLL patients and Carers: Unmet needs in Healthcare and Support” is now published and released on our website.

The report provides a comparison analysis of some findings from three separate surveys conducted in 2021 and 2022 of individuals with CLL and their carers about their experiences, and with patient organisations from across the globe about CLL resources provided and unmet needs.

The analysis was based on the results of the CLL Patient Advocacy and Support Survey (CLL-PAGS) conducted by CLLAN in 2021, the Global Leukemia Patient Experience Survey (GPES) conducted in 2021/22 and the Global Leukemia Carer Experience Survey (GCES) conducted in 2022. The latter two were conducted in collaboration with two partner networks: Acute Leukemia Advocates Network (ALAN) and CML Advocates Network (CMLAN). For the latter two surveys, the analysis concentrates on data relating to CLL patients only (a subset of the wider data across different leukemia types).

The report helps inform the CLL Advocates Network´s strategy to continue to support the needs of our global community and areas to improve outcomes for people living with Chronic Lymphocytic Leukemia (CLL). 

We’re grateful to the 57 organisations representing 40 countries globally and the more than 1200 patients and more than 130 carers who were willing to complete the surveys. This participation from diverse cultures, economies, and health systems, provides CLL Advocates Network with insights to support our global network.

READ THE REPORT FINDINGS AND ACCESS THE FULL REPORT & EXECUTIVE SUMMARY HERE!

As with many aspects of healthcare, a collaborative approach that encompasses the perspective of patients and carers alongside the work of researchers, support organisations, healthcare providers, pharmaceutical companies and wider policy makers will be the most progressive route to make lasting changes. These changes will ultimately save lives. 

We wish to thank all those groups and individuals that took the time to complete any of the three surveys that allowed us carry out this comparison analysis The above reports are YOUR reports! Thank you for contributing to these important pieces of evidence!

We are pleased to announce that our 2021 survey report “Resource Mapping and Unmet Needs Survey: Service Provision and Impact of COVID-19” is now published and released on our website.

The report helps inform the CLL Advocates Network´s strategy to continue to support the needs of our global community and areas to improve outcomes for people living with Chronic Lymphocytic Leukemia (CLL). 

We’re grateful to the 57 organisations representing 40 countries globally who participated in the survey and provide support to people living with CLL. This participation from diverse cultures, economies, and health systems, provides CLL Advocates Network with insights to support our global network.

This survey has identified gaps in service provision and how this differs across organisations and between different countries across the globe. There is clearly, from the responses provided to this survey, a deficit in services particularly for patients in low-and-middle-income countries (LMIC).

READ THE REPORT FINDINGS HERE

As with many aspects of healthcare, a collaborative approach that encompasses the perspective of patients and carers alongside the work of researchers, support organisations, healthcare providers, pharmaceutical companies and wider policy makers will be the most progressive route to make lasting changes. These changes will ultimately save lives. 

We wish to thank all those groups that took the time to complete this survey and for helping identify advocacy needs of worldwide organisations providing support to CLL patients and sharing good practice. The above reports are YOUR reports! Thank you for contributing to these important pieces of evidence!

17 October 2022 – Live Satellite Symposium: Solving the Puzzles for B-Cell Malignancies – Navigating the Place of BTK Inhibitors Today and Tomorrow
12:30 pm – 2:00 pm ET
18:30 – 20:00 CET

Event Registration

CLLAN and Medscape are inviting to an interactive discussion on the role of BTK inhibitors in treating B-cell malignancies – how BTK inhibitors fit into the treatment landscape and the clinical evidence supporting their use. CLLAN´s chair, Nick York, is sitting in the panel of experts and will be representing the patient voice.

Description:
The treatment landscape of B-cell malignancies continues to evolve, with new and novel drugs being investigated and added to the armamentarium. Since their introduction, Bruton tyrosine kinase (BTK) inhibitors have dramatically changed the treatment of B-cell malignancies, emerging as one of the backbones of treatment. The high anti-lymphoma activity of BTK inhibitors has led to approvals to treat chronic lymphocytic leukemia (CLL), Waldenström macroglobulinemia (WM), marginal zone lymphoma (MZL) and mantle cell lymphoma (MCL).

Join our multidisciplinary panel of experts, including hematologists, a specialist nurse, and a patient advocate, as they guide us in an interactive discussion on the role of BTK inhibitors in treating B-cell malignancies – how BTK inhibitors fit into the treatment landscape and the clinical evidence supporting their use. The panel will also explore patient perspectives in the management of their disease using BTK inhibitors, with emphasis on the needs of the patient, and the importance of meeting their treatment goals.

Enhance Your Virtual Experience With Backstage Pass!
Join our 30-minute post-symposium breakout session connecting the program speakers and audience in the virtual environment. Backstage Pass provides an intimate virtual session where you can interact with faculty, address case-based questions, and facilitate relationship building.

*Video Encouraged*

Moderator:
Christian Buske, MD
Director
Institute of Experimental Cancer Research
University Hospital Ulm
Ulm, Germany​

Panelists:
​​Helen Knight
CLL Clinical Nurse Specialist
The Russell Centre for Clinical Haematology
Nottingham University Hospitals
Nottingham, United Kingdom​

Alessandra Tedeschi, MD
Medical Director
Hematology Department
Niguarda Cancer Center
Milan, Italy​

​​Steven Treon, MD, PhD
Professor
Harvard Medical School
Director
Bing Center for Waldenström’s Macroglobulinemia
Dana Farber Cancer Institute
Boston, Massachusetts, United States​

​Nick York
Chair
CLL Advocates Network
Leukemia Patient Advocates Foundation
Bern, Switzerland

Agenda:
MONDAY, OCTOBER 17, 2022
12:30 pm – 2:00 pm et
18:30 – 20:00 cet

Welcome and Introductions
Christian Buske, MD

BTK Inhibitors and B-Cell Malignancies: A Patient View
​Nick York
​​Helen Knight

The Puzzle of CLL: Integrating BTK Inhibitors Across the Disease Continuum
​​Alessandra Tedeschi, MD

The Puzzle of WM: Genome Profiling Clues to Inform Treatment Decisions With BTK inhibitors
​​Steven Treon, MD, PhD

The Puzzle of BTK inhibitors and Other Indolent NHLs: Extending Outcomes in Relapsed/Refractory Disease
Christian Buske, MD

The Puzzle of MCL: The Evolving Role of BTK inhibitors
Christian Buske, MD

Conclusion
Christian Buske, MD

Adjourn
2:00 pm – 2:30 pm

Backstage Pass

Registration Link

TARGET AUDIENCE
This activity is intended for an international audience of non-US hematologists/oncologists, pathologists, cardiologists and other healthcare providers involved in the care of patients with B-cell malignancies.

GOAL STATEMENT
The goal of this activity is that learners will be better able to use BTK inhibitors for the individual patient with B-cell malignancies.

LEARNING OBJECTIVES
Upon completion of this activity, participants will:

Have increased knowledge regarding the
– Latest clinical data with BTK inhibitors for B-cell malignancies
– Factors informing treatment decisions with BTK inhibitors for B-cell malignancies

Have greater competence related to
– Using BTK inhibitors to manage patients with B-cell malignancies

Demonstrate greater confidence in their ability to
– Integrate the latest data with BTK inhibitors into the management of patients with B-cell malignancies

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 (#WCLLD) we come together to improve understanding of the vulnerability of CLL patients and the challenges involved in living with CLL. The 2022 Campaign Toolkit is now available – there are lots of things you can do in the lead-up to the campaign, as well as joining us on the day!

For World CLL Day 2021, the umbrella, a form of shield, was chosen as the central campaign image. You can hold it over yourself or someone else, emphasising the aspect of proactive choice to protect others, e.g. by wearing a mask, getting vaccinated & making room.

The umbrella still carries the message into World CLL Day 2022. CLL patients and other immunocompromised patients need help to be able to get on board with those more able to navigate the world as COVID-19 restrictions are lifted across the globe. World CLL Day 2022 also takes into account the current climate where there is a level of virus circulating in society and weariness about the pandemic information. For this, we have chosen to turn the umbrella into a boat by simply flipping it. We want to emphasize the idea of protection while at the same time reinforcing the message of moving forward and navigating the world with COVID-19.

On this World CLL Day, under the hashtags #WCLLD22 #getonboard and #withteamCLL we ask the community to consider CLL patients and other immuno-compromised patients and help them get on board.

The downloadable campaign materials for the 2022 campaign and details are now available on the WCLLD website.

Join us and help spread the message in the lead-up to World CLL Day 2022 and on 1 September 2022!