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.

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. 

Final call for virtual registration! – CLICK HERE TO REGISTER

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).

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

Dear friends of the CLL Advocates Network

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.

Visit campaign website for:
How to get involved in the WCLLD 2024 campaign
WCLLD 2024 Campaign toolkit

August 15th, 2024 at 5:00PM BST / 6:00PM CEST we will hold a webinar on “Exploring the World CLL Day 2024 Campaign Toolkit: Strategies & Involvement”. In this webinar, we’ll go through the 2024 Campaign Toolkit and discuss how you can get involved and use provided assets to shape your own campaign. —-> REGISTER HERE

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.

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.

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 open – CLICK 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

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

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 2016, CLL Horizons 2018, CLL Horizons 2019, CLL Horizons 2021.

We have exciting news to share. CLL Advocates Network, CML 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.

Nicole Schröter, a valued colleague, is leaving her position as Project Manager at CLL Advocates Network (CLLAN) after four years of dedicated service. We bid her farewell with heavy hearts as she embarks on a new chapter in her career.

Nicole joined CLLAN in March 2020, bringing valuable experience and professionalism. As CLLAN Project Manager, she played a key role in keeping the network running smoothly and coordinating tasks effectively. From managing communication among Steering Committee members to building partnerships with our members and other networks, Nicole led many successful CLLAN projects. Her careful attention to detail and excellent organisational skills have been crucial in achieving CLLAN’s goals.

On behalf of CLL Advocates Network, we thank Nicole sincerely and wish her all the best in her future endeavours. 

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