Author: Nicole [Germany]

Please join us in welcoming two new organisations to the CLL Advocates Network: ASPALLC (Chronic Lymphocytic Leukemia Patients Association) from Spain and the Leukemia & Lymphoma Society of Canada (LLSC) from Canada!

ASPALLC is a Spanish nonprofit patient organisation established in 2025 and based in Madrid, with a nationwide focus on supporting people affected by CLL. The Association works to improve the quality of life of people living with CLL and their families by providing information, guidance and comprehensive support following diagnosis.

ASPALLC also promotes collaboration with healthcare professionals, medical societies and the scientific community, contributes to patient-centred research and works to raise awareness of CLL, defend patients’ rights and promote equitable access to high-quality healthcare.

The Leukemia & Lymphoma Society of Canada (LLSC) is a national charitable organisation supporting people affected by blood cancers and their families, with a partial focus on CLL. LLSC provides targeted blood cancer information, personalised support and guidance, psychological and emotional support, peer support and advocacy.

The organisation also funds research from bench to bedside and contributes to patient-centred research, while helping people navigate their blood cancer experience and empowering them to take an active role in their healthcare.

With these two additions, CLLAN now brings together 60 member organisations from 48 countries, further strengthening our global community of organisations working to improve support, information, advocacy and outcomes for people affected by CLL.

We are delighted to welcome ASPALLC and the Leukemia & Lymphoma Society of Canada (LLSC) to our growing international network and look forward to working together to strengthen the voice and support of people affected by CLL around the world.

To learn more about ASPALLC and the Leukemia & Lymphoma Society of Canada (LLSC), please visit their profiles in our members section.

Please join us in welcoming Bekämpa LMC Ecuador, CLLAN’s first member organisation from Ecuador!

Founded in 2019 by patients, Bekämpa LMC Ecuador supports people living with leukaemia and other cancers, as well as their families and caregivers. The Foundation works to protect patients’ rights and improve access to healthcare services, diagnostic tests, medicines and appropriate treatment. 

The organisation provides emotional, practical and legal support, alongside educational activities, patient advocacy and humanitarian assistance. It also empowers patients to understand their rights, navigate the healthcare system and participate actively in decisions about their care. 

We are delighted to welcome Bekämpa LMC Ecuador to our growing international network and look forward to working together to strengthen support and advocacy for people affected by CLL.

To learn more about Bekämpa LMC Ecuador, please visit their profile in our members section.

On 29 July 2026, the CLL Advocates Network hosted the webinar “New EHA CLL Guidelines – Shaped with Patients, Explained for Patients.”

Professor Anna Schuh, Professor of Haematology at the University of Oxford and co-author of the guidelines, explained the key recommendations and what they mean in practice for people living with CLL.

The presentation covered diagnosis, active surveillance, genetic testing, treatment selection, relapse, supportive care and Richter transformation. It also explored the growing range of treatment choices, including time-limited and continuous therapies, and the importance of considering individual patient needs and preferences.

The session was moderated by Nick York, who was joined for the panel discussion by Pierre Aumont, Johannes Förner and Rita Christensen. All four patient advocates contributed to the guideline writing or review process.

The discussion focused on:

• quality of life and immune compromise;
• active surveillance and patient empowerment;
• shared decision-making;
• communication and trust with clinicians; and
• the need for more real-world patient evidence.

The panellists also highlighted the important role of patient organisations in making complex guidelines easier to understand and helping patients feel confident discussing their care and treatment choices with their healthcare team.

We thank all our speakers and panellists, as well as everyone who joined the webinar and contributed with their questions.

The webinar recording is now available

Please join us in welcoming Hong Kong Adult Blood Cancer Group Ltd., CLLAN’s first member organisation from Hong Kong!

Founded in 1997 by patients, family members, and medical and nursing staff from the Prince of Wales Hospital, the group supports adults living with blood cancers, including leukaemia, lymphoma and myeloma, as well as their families.

The organisation provides a territory-wide peer support network through regular meetings, sharing groups, counselling, medical talks, newsletters, recreational activities and public education initiatives. It also works to increase patients’ understanding of their treatment, raise public awareness of the needs of people affected by blood cancer and advocate for patients’ rights.

We are delighted to welcome Hong Kong Adult Blood Cancer Group Ltd. to our growing international network and look forward to working together to strengthen support and advocacy for people affected by CLL.

To learn more about Hong Kong Adult Blood Cancer Group Ltd., please visit their profile in our members section.

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 English Digital version HERE

🔗  Download Spanish Digital version HERE

🔗  Download Hindi Digital version HERE

🔗  Download Chinese Digital version HERE

🔗  Download Arabic Digital version HERE

🔗  Download Portuguese Digital version HERE

🔗  Download Swahili Digital version HERE

🔗  Download Polish Digital version HERE

🔗  Download German Digital version HERE

🔗  Download French Digital version HERE

🔗  Download Czech Digital version HERE

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.