Highlights from CLL Horizons 2019
CLL Horizons 2019 focused on CLL patient advocacy group models from around the world, what made them work, where improvements could be made, and where the future was heading. There was a lot of discussion on sharing of resources amongst the various groups, so as not to “reinvent the wheel”, and you will soon see examples of this here on our site.
Psychosocial support provision, use of social media to communicate among individuals and groups, examples of successful advocacy, and the various ways in which advocacy groups can make positive contributions to research were major components of the formal presentations. There were also several presentations about the current state of the science and medical therapeutics of the disease CLL.
Neil was invited to present the story of a new advocates’ group, on how we’re developing CLLANZ and lessons learned, as well as the future role of the organisation. Click below to view Neil’s presentation as a PDF.
Slide highlights from CLL Horizons
This is a series of slides from the recent conference, CLL Horizons, in Edinburgh that may be of interest to CLL patients.
Presentations and videos from the conference
These early sessions on foundation learning prepare advocates with understanding of basic CLL biology, patient challenges and current issues to prepare them for more involved discussion, clinical, scientific and advocacy sessions during the conference.
The last two videos in this series are on organisational sustainability, Presentations from new start up and established patient groups frame discussion about organisational sustainability. How do we keep our successful organisations functioning long-term? What are the priorities? How do we best support our communities?
CLL 101 - The Basics, PART 1 - Lorna Warwick, CEO Lymphoma Coalition.
CLL Horizons 2019, Edinburgh, Foundation Learning, – Lorna Warwick, CLL Advocates Network, (Past Chair) & CEO of Lymphoma Coalition explains Chronic Lymphocytic Leukaemia
CLL 101 - The Basics. PART 2, Michael Rynne - CLL Ireland.
CLL Horizons 2019, Edinburgh, Foundation Learning, – Michael Rynne, CLL Advocates Network steering committee member & co-founder of CLL Ireland explains Chronic Lymphocytic Leukaemia.
CLL 101 - The Basics. PART 3, Dr Brian Koffman - CLL Society.
CLL Horizons 2019, Edinburgh, Foundation Learning – Dr Brian Koffman, CLL Advocates Network steering committee member, CLL Society Chief Medical Officer and Executive Vice President explains Chronic Lymphocytic Leukaemia.
The Changing Therapeutic Landscape - Lorna Warwick, CEO Lymphoma Coalition.
CLL Horizons 2019, Edinburgh, Foundation Learning – The Changing Therapeutic Landscape – outline discussion to prepare patient advocates ahead of CLL Horizons conference
Lorna Warwick, CLL Advocates Network, (Past Chair) & CEO of Lymphoma Coalition
Getting Started - Challenges and Lessons - Dr Neil Graham, founder of CLL Advocates New Zealand
A New Start – Dr Neil Graham, clinical consultant, CLL patient and founder of CLL Advocates New Zealand (CLLANZ) launched last year, shares experience of the first year. CLL Horizons 2019, Edinburgh, Day 1 Advocacy workshops – Organisational Sustainability
An established patient group's priorities - Lise-lott Eriksson, Chair, Blodcancerförbundet
Lise-lott Eriksson, Chair of the Sweidish Blood Cancer Association discusses evidencing advocacy strategies to support the groups membership and prioritising activities.
CLL Horizons 2019, Edinburgh, Day 1, Advocacy workshops – Organisational Sustainability