Proudly welcoming another new member: The CLLAN now counts 54 members from 44 countries!

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.

To learn more about Henzo Kenya, please visit their profile in our members section.

The CLL Advocates Network now counts 54 members from 44 countries!

Click here to see our full list of members.

Registration is now open – Join us for the 5th “CLL Horizons: Learn. Share. Grow” Hybrid Conference

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. 

Registration is now openCLICK HERE TO REGISTER

Event Details:

  • Date: 27th – 29th September 2024
  • Location: 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.
    • Abstract application form is available HERE
  • Poster Presentation:
    • Please note that for your second delegate to qualify for a conference fee waiver, you must submit a poster.
    • You will find the poster template HERE.
    • 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.

Draft Agenda: 
You can view draft agenda HERE,

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).

Registration Details:
Delegate Eligibility Criteria

  • 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

Steps Towards Establishing a New Community-led Initiative Focusing on Immune Challenges

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.

We aim to build on the insights from our 2023 white paper, “Compromised: Uncovering the Immune-Related Challenges Facing People with Chronic Lymphocytic Leukaemia”  funded by AstraZeneca, and establish a new community-led initiative that will translate these findings into tangible improvements for people living with CLL.

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

SECURE YOUR SPOT! Pre-Register Now for CLL HORIZONS 2024

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. 

Venue: Hotel Meliá Barcelona Sky

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. 

Go view previous CLL Horizons Conferences sessions and recordings visit: CLL Horizons 2016CLL Horizons 2018CLL Horizons 2019CLL Horizons 2021.

Registration for “Building Relationships with Healthcare Professionals | Hematologists” course and enrolment is now OPEN.

We have exciting news to share. CLL Advocates NetworkCML Advocates Network and Acute Leukemia Advocates Network is launching the Leukemia Patient Advocates Academy – a groundbreaking program designed to empower and educate patient advocates.

This is an opportunity for patient advocates to be a part of a repeated course which is aimed at building capacity in both smaller and larger patient advocacy groups and will help to ensure sustainability in advocacy efforts.  

All CLLAN members are invited to enroll to this FREE COURSE!

“Building Relationships with Healthcare Professionals | Hematologists”

Registration and enrolment is now open for the course titled “Building relationship with healthcare professionals | hematologists”. This course will help many advocates as they navigate the challenge of creating effective relationships with the clinical community.  

Why this course may be useful to the CLL patient advocate? 
Expert Insights: Learn from renowned hematologists, including Professor Jeffrey Lipton, Professor Francois Xavier Mahon, and Professor Gianantonio Rosti.
Valuable Skills: Master communication techniques and problem-solving strategies tailored to enhancing your relationships with healthcare professionals.

How It Works? 
Flexible Learning – Access online lessons at your convenience and participate in two live interactive workshops.

In the video below you will hear a short overview of what this course will help you achieve:

When do we start & how to enroll?
Attend two live online workshops and take all online educational lessons within 5 weeks. Dates to remember and mark in your calendars to make sure you attend live online workshops are:  

  • Saturday, 27th April at 12 PM CET | 11 AM BST | 7 PM JST | 8 PM AEST | 6 AM EDT | 6 PM PHST | 3:45 PM NPT | 1 PM EAT | 7 AM ART
  • Saturday, 1st June at 12 PM CET | 11 AM BST | 7 PM JST | 8 PM AEST | 6 AM EDT | 6 PM PHST | 3:45 PM NPT | 1 PM EAT | 7 AM ART

E-Learning lessons are divided into 3 units, unlocking weekly. Access lessons at your own convenience.

Limited spaces are available so register using the registration form below to secure your spot. 

If you have any questions or need navigation details, send us an email at academy@lepaf.org.

We are welcoming Jan Rynne to the CLL Advocates Network team

We are excited to have Jan joining our Team! Jan will be supporting projects and managing stakeholder relations. We look forward to moving the mission of CLLAN forward with Jan’s help.

In 2011, at the age of 39, Jan was diagnosed with CLL. Jan had an opportunity to take part in a clinical trial in the UK for a novel therapy in 2014 and is presently doing well on treatment.

In 2017, she and her husband Michael founded Chronic Lymphocytic Leukaemia Ireland, a patient-led advocacy group and registered charity that aims to support others with CLL along with their care partners and families. Jan sits as the chairperson of the CLL Ireland trustee board.

Jan is an active member of Precision Oncology Ireland’s Governance Committee, the overall oversight board for the POI programme.

In 2023, Jan graduated with a first-class honours degree in the Health and Society programme from Dublin City University and is also a graduate of the Ipposi Patient Education course.

Jan is passionate about patient advocacy and believes that positive change for CLL patients can be affected by collaboration, connection and communication.

Meet the CLLAN Team

Navigating a post-pandemic world: A guide for immunocompromised blood cancer patients

In late 2021, a multi-stakeholder coalition consisting of representatives from the global patient advocacy and clinical community formed the International COVID-19 Blood Cancer Coalition (ICBCC) to address the specific impact of COVID-19 on immunocompromised blood cancer patients (both acute and chronic), like those living with CLL and other Non-Hodgkin lymphomas (NHLs).

The CLL Advocates Network (CLLAN) as the coalition secretariat is proud to announce the launch of the ICBCC COVID-19 Patient Booklet entitled “Navigating a post-pandemic world: A guide for immunocompromised blood cancer patients”. The guide is currently available in English only. Plans for translation are underway.

This booklet is aimed at immunocompromised blood cancer patients that live with a weakened immune system due to their illness or the treatment they receive and often suffer from frequent or severe infections. The objective of this booklet is to help these patients live a better quality of life and empower them when making decisions when navigating in a post-pandemic world.

The booklet is based on coalition members´ input collected during calls and provided in writing through a survey circulated in 2023. We express our gratitude to the dedicated ICBCC working group for their valuable contributions in shaping the content, providing advice, and offering helpful comments over the past months, and to the clinicians who have contributed and reviewed the booklet for us ahead of launch and validated it from a clinical standpoint.

You can access the COVID-19 Patient Booklet here.

Please share widely with your networks and with immunocompromised blood cancer patients to whom this may be of interest!

As part of ICBCC 2023/24 toolkit comprised of different educational materials the GP information booklet will follow.

SAVE THE DATE and circle 27-29 September in your diaries for the 2024 CLL Horizons Hybrid Conference in Barcelona, Spain

CLL Horizons, the international conference of organisations representing people with CLL, is designed to build capacity in patient advocates and grow their skills on medical and advocacy topics. It is a unique opportunity for patient advocates and patient organisation representatives supporting CLL patients to:

  • Learn about the disease, treatments and latest research from leading doctors;
  • Hear from fellow advocates on key topics, including awareness, education and drug access;
  • Meet and network with others doing similar work, giving them the opportunity to discuss issues facing CLL patients.

Building on the success of previous conferences held in person from 2016 to 2019, and the 2021 conference which was held in fully virtual format in response to the global pandemic. We are now excited to announce that preparations for the 2024 CLL Horizons Conference are underway reenabling face to face in person attendance by your organisations’ representatives. This will be a hybrid event offering those unable to travel a virtual opportunity to participate.

This years’ hybrid CLLHZ24 is hosted 27 – 29 September by CLLAN in the stunning city of Barcelona, Spain. As with previous CLL Horizons events this year the event is positioned to ensure maximum collaboration opportunities between CLL clinical research and patients’ advocacy communities. CLLHZ24 is therefor running alongside the European Research Initiative on CLL (ERIC) International Meeting, “New Frontiers in CLL Research”.

Please save these dates in your diaries. 

Stay tuned for further details: venue, booking information and agenda will come available very soon HERE. We will keep you updated with all the necessary information to plan your participation in CLLHZ24.

Save the date for World CLL Day 2024 and become involved!

Chronic lymphocytic leukemia (CLL) is a type of cancer of the blood and bone marrow. It is the most common leukemia in adults.

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 share resources to improve understanding of the life of those affected by a diagnosis of CLL. World CLL day offer opportunities to share information and initiatives to improve their quality of life, experience and outcomes.

For this year campaign updates and information of previous campaign themes please visit the World CLL Day page.

Campaign materials are designed and created in different languages with a communication plan to help all those effected by diagnosis (CLL patients and their loved ones, all stakeholders, CLLAN members and campaign supporters) to get involved and prepare their own communications plan in the run-up to World CLL Day and shape their own activities. These will be made available on the campaign website in due course.

Save the date for World CLL Day 2024 and become involved!

While the organising committee continues preparations for the central 2024 campaign theme, we will welcome your early involvement as we shape this campaign together. As the campaign develops we will keep everyone updated directly by communication channels and through campaign website.

We wish to thank all for your support to ensure World CLL Day is as impactful, meaningful and memorable as possible to improve patients’ outcomes, and we look forward to working and campaigning together in 2024. 

Please contact us at info@clladvocates.net if you or your organisation wishes to be involved during the early planning stages.

Empowering Communities: Launching the CLLAN Advocacy Toolkit!

We are delighted to share news of the official launch of the CLLAN Advocacy Toolkit – a CLLAN initiative that represents a significant milestone in our ongoing commitment to supporting organisations in their journey of assisting CLL patients and carers.

The CLLAN Advocacy Toolkit is more than just a compilation of resources; it is a dynamic platform that aims to support the initiation and development of CLL support groups, particularly in regions where external support is scarce.

This tool is dynamic, with ongoing additions of content and resources, the pillars will become more complete and representative of needed resources in your region. We encourage you to contribute any relevant materials, whether developed by your group or others. Your input will be greatly appreciated! This will ensure that this resource grows to meet advocacy needs.

We invite you to explore the CLLAN Advocacy Toolkit on our website: https://advocacy.clladvocates.net

Contact info@clladvocates.net to share advocacy development materials for inclusion you feel will be of benefit to the community.