A. Children and Young People with Lymphoedema
Presenters: Prof. Isabelle Quéré, Elodie Stasi, Arthur Bagonza, Prof. Christine Moffatt (CBE) Integration of psychosocial work among children with lymphoedema (Prof. Isabelle Quéré) This session highlights integrating psychosocial support into pediatric lymphoedema care, addressing stigma, bullying, anxiety, depression, and family stress. Holistic management through counselling, peer support, community sensitisation, and school inclusion fosters resilience and reduces stigma within multidisciplinary care. Experiences of running children’s camps with lymphoedema (Elodie Stasi) Children’s camps offer safe spaces for learning, bonding, and empowerment for children and families. Combining education on self-care, psychosocial support, recreation, and family engagement, camps also provide research opportunities on quality of life and self-efficacy. Despite logistical and emotional challenges, camps boost confidence, reduce stigma, promote resilience, and strengthen advocacy and health policy networks. Pilot results of a self-efficacy tool for professionals (Arthur Bagonza) The Professional Self-Efficacy Tool (PSET) captures healthcare professionals’ perception of their ability to support patient self-management. This session presents its development, validation, and potential to improve training and strengthen lymphoedema services worldwide. International perspective on the psychosocial impact of children and young people with lymphoedema (Christine Moffatt) This session presents findings from an international study on the psychosocial impact of lymphoedema in children and young people. Shared challenges of stigma, isolation, and emotional distress are explored alongside cultural differences, highlighting global best practices to guide child-centered care and policy interventions.
B. Global Struggles, Shared Solutions: Improving Access to Lymphedema Care
Presenters: Sandro Michelini, MD (Italy), Anna Towers, MD (Canada) Session Description: Access to appropriate lymphedema care continues to be a challenge around the world. This session offers two international perspectives on the systemic barriers and shared determination of patients, professionals, and advocates in improving care. The management of patients with lymphedema in Italy and worldwide Presenter: Sandro Michelini, MD (Italy)In many countries, patients with lymphedema face enormous difficulties in accessing care through public and private health systems. A lack of knowledge, errors in differential diagnosis, and the low consideration given to the damage caused by these diseases all result in reduced quality of life as well as high social and economic costs. This presentation outlines the institutional and regulatory steps that have allowed Italy to establish a more adequate welfare network across much of the country, and the future projects proposed to further improve care. The courage to carry on: comrades-in-arms in the fight for resources Presenter: Anna Towers, MD (Canada)Valuable opportunities arise during international meetings of national frameworks, such as this ILF conference. These gatherings allow us to share experiences, especially in recessionary times, when securing funding for new health care programs can feel like a struggle. Drawing on the Canadian context, this presentation shows how lymphedema framework partners step up in difficult times, reminding us that we are a true international community of patients, advocates, young professionals, and senior leaders.
C. European Reference Network for Primary and Pediatric Lymphedema (PPL): 10 Years of Experience and Future Directions
Presenters: Robert J. Damstra, MD PhD; Vaughan Keeley, MD; Kirsten van Duinen, MD Over the past 10 years, expert centres across Europe have strengthened their collaboration—sharing knowledge, exchanging experience, and enhancing cross-border healthcare for patients from all EU states. Dr. Damstra will present the work of this international group, which now includes representatives from more than nine countries, bringing together both healthcare providers and patient advocates. Through monthly meetings, the group discusses patient cases via a secure European platform (CPMS), works to improve patient care, advances research, and develops care standards for primary lymphedema. Building on this overview, Dr. Vaughan Keeley will share new pediatric results in primary lymphedema, offering insights into outcomes and clinical experiences in younger patients. Dr. Kirsten van Duinen, dermatologist at the Nij Smellinghe Hospital Center of Expertise for Lymphovascular Medicine, will highlight patient awareness and communication strategies, showcasing innovative tools developed to support both patients and healthcare providers. Further information can be found on the EU-supported website: www.vascern.eu
D. ILA Professional Stream Session 3. Focus: Building Bridges: Conversations of ILA and Other Organizations
Chairs: Gabriele Erbacher , Ad Hendrickx 1. Genetics in lipoedema - results and ongoing research Presenter: Kristiana Gordon (UK) 2. Insights form Lymphedema health care professionals managing lipalgia syndrome / lipedema; a service evaluation Presenter: Melanie Thomas (Wales) 3. HRQoL of females living with lipoedema compared with bilateral leg lymphoedema Presenter: Rhiannon Stellmaker (Australia) 4. Comprehensive needs assessment for enhancing self-management in people with lipoedema and the support provided by their health care providers Presenter: Lise Maren Kloosterman (Netherlands) 5. Questions for the speakers
E. A Patient-Centered Approach for Future Lymphedema Care Prioritization
Presenters: Catharine Bowman, BHSc, PhD Candidate, Juliana Conte, PhD, Lori Radke, PT CLT. There are many uncertainties associated with lymphedema; however, there is little consensus to guide prioritization of addressing these uncertainties within the field. This in-person roundtable session is intended to address this gap. We aim to amalgamate and critically assess lymphedema-related care gaps identified by lymphedema stakeholders in an in-person roundtable discussion format at the conference. The roundtable session will be collaboratively led by facilitators involved in the lymphedema community. Topics of uncertainty will be compiled in advance of the conference and used to guide each table discussion. At the conference, we propose the review of these topics to select and establish a prioritization list for future care development in the realm of lymphedema. Planned Activities: At the conference, a roundtable discussion will occur to identify the benefits and challenges associated with each category of uncertainty to establish a standardized list of lymphedema-related priorities. This patient-centered approach ensures that future lymphedema care is informed by a variety of perspectives, especially those of the patients themselves. Intended Outcomes: The ultimate goal of this session is to establish a community-informed standard of care priorities for the global lymphedema community. We plan to disseminate this work through presentations to lymphedema organizations as well as written format for community use.
F. Are GLP-1s the First Class of Drugs to Truly Improve Lymphedema? Preliminary Prospective Trials Results and Implications
Presenter: Dr. Joseph Dayan GLP-1 receptor agonists are widely known for their role in treating diabetes and obesity—but could they also play a groundbreaking role in lymphedema care? In this timely and thought-provoking session, Dr. Joseph Dayan shares early findings from prospective trials exploring the potential of GLP-1s to reduce swelling and improve symptoms in patients with lymphedema. The session will explore key data, clinical implications, and what this could mean for the future of conservative and surgical treatment pathways.
G. Oral Abstracts – Emerging Diagnostics and Treatments in Breast Cancer-Related Lymphedema (Expand for Details)
Explore a dynamic collection of cutting-edge oral abstract presentations, showcasing new research, innovative practices, and diverse global perspectives across the field of lymphoedema. Expand for full details of the abstracts being presented in this session.
H. Oral Abstracts – Treatment-Related Risk and Novel Interventions in Lymphedema (Expand for Details)
Explore a dynamic collection of cutting-edge oral abstract presentations, showcasing new research, innovative practices, and diverse global perspectives across the field of lymphoedema. Expand for full details of the abstracts being presented in this session.