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.

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

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.

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.

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. 

We wish everybody lovely Christmas and a successful start of a happy and healthy 2024.

Please find our Christmas greetings here:

Results in English and Finnish:

• English: www.syopapotilaat.fi/opas/cancer-and-work-survey-2023-syopa-ja-tyoelama-kyselyn-2023-tulokset-englanniksi-saatavilla-vain-pdf-versiona/
• Finnish: www.syopapotilaat.fi/opas/syopa-ja-tyoelama-kyselyn-2023-tulokset/

We encourage all members to access the document and thoroughly explore the rich insights provided by this survey.