Day 2: Saturday, 28 September 2024 – Best Practices in Advocacy and Medical Insights
The second day of CLL Horizons 2024 began with a sense of excitement as attendees looked forward to diving into advocacy best practices and gaining medical insights from experts around the world. The day was designed to empower patient advocates and offer participants the tools and knowledge to advance CLL treatment and support efforts globally.
To relive the highlights of this engaging day, don’t miss the Day 2 video summary below.
Morning Sessions: Showcasing Global Advocacy Initiatives
The morning began with Advocacy Session #2, showcasing global initiatives from around the world. Chaired by Jana Pelouchova (CZ) and Jennifer Wilson (US), these sessions highlighted best practices in CLL advocacy from organisations like the Brazilian Lymphoma and Leukemia Association (ABRALE), presented by Catherine Moura (BR), and CLL Support UK, with a presentation by John Greensmyth (UK). Other key contributions came from advocates such as Georgi Georgiev from the Bulgarian Lymphoma Association, Ron Moskovitch from Israel’s Flute of Light, and Aleksandra Mladenovic from Serbia’s Lymphoma Patient Association (LIPA).
Advocacy Workshops: Hands-on Learning and Strategy Development
In the second part of the morning, attendees split into small group workshops to dive into specific topics around advocacy:
- Workshop 1: Supporting People Affected by a CLL Diagnosis
Facilitators: Jennifer Wilson (US), Jana Pelouchova (CZ), John Greensmyth (UK), Catherine Moura (BR), Deborah Henderson (AU), Lea Koren (IL)
This workshop explored best practices for service delivery, highlighting practical examples and strategies to overcome barriers in patient support. - Workshop 2: Diversity, Equity, and Inclusion (DEI) Principles in Cancer Care and Research
In Breakout Room Cloud 1+2, facilitators Jan Rynne (IE) and Khullat Munir (DE) guided participants through the relevance of DEI in healthcare, exploring what makes communities diverse, why DEI is crucial for clinical research and care, and how to overcome barriers to inclusion. - Workshop 3: Optimising CLL Clinical Trials Information
Facilitators: Johannes Förner (DE), Nick York (UK), Mirna Tomasevic (HR)
This workshop addressed the CLLAN CLL clinical trials search facility and provided guidance on understanding clinical trials information and its importance for patient advocacy. - Workshop 3 (take 2 & 3): Communications Policy and Implementation
Facilitators: Alfonso Aguarón (ES), Mirna Tomasevic (HR), Peter Haggert (CA)
This session focused on the development of effective digital communication strategies for advocacy. Participants discussed how to determine what is right for their organisation or campaign, as well as how to implement strategies using different communication channels.
Medical Session #1: The Current Treatment Landscape of CLL
After a quick lunch break, attention shifted to Medical Session #1, chaired by Brian Koffman (US) and Michael Rynne (IE). This session gave attendees a comprehensive update on the latest developments in CLL treatment. Professor Florence Cymbalista (FR) presented on 1st line treatment, and Dr. Miguel Pavlovsky (AR) discussed strategies for re-treatment. A stimulating panel discussion followed, focused on the challenges of treatment sequencing for CLL.
Advocacy Session #4: Turning Evidence into Action
The afternoon Advocacy Session led by Nick York (UK) and Kathryn Huntley (AU) delved into the results of the 2023 Global Leukemia Patient and Carer Experience Survey, revealing key unmet needs in the CLL community. The session also introduced the launch of the CLLAN 2024 Global CLL Advocacy Survey. The goal of these discussions was to encourage collaboration and translate these findings into real-world actions, particularly through the creation of the CLL Treatment Compass.
Medical Sessions #2 and #3: Managing CLL in LMICs and Exploring New Frontiers
The day ended with two essential medical sessions:
- Medical Session #2: CLL Management in Low- and Middle-Income Countries (LMICs)
Speakers discussed the specific challenges of treating CLL in LMICs, including local practice needs and the roll-out of precision medicine in these regions. - Medical Session #3: New Frontiers in CLL Treatment
Speakers shared the latest advancements in MRD-guided management and next-generation treatments, offering a forward-looking view of CLL care and new treatment targets.
A Collaborative Day of Learning and Action
As Day 2 concluded, attendees left inspired and equipped with new knowledge, ready to take action and continue advocating for better CLL treatment and support across the globe. The collaborative spirit of the day fostered a deep exchange of ideas and strengthened connections between participants, paving the way for future progress in the CLL community.
We would like to thank the following for their event grant support:
