VASCERN News
30 June 2025
Webinar Replay: Spectrum of Clinical Manifestations in CADASIL with Prof. Hugues Chabriat
On June 25th, 2025, the Paediatric and Primary Lymphoedema (PPL) Working Group gathered in Brussels for their annual spring meeting. Healthcare professionals, and patient representatives from across Europe came together for a full day of discussion, collaboration, and planning for future initiatives to support those living with paediatric and primary lymphoedema.
The meeting opened with a warm welcome from the Chair, Robert Damstra, and covered a wide range of topics from improving clinical tools and exploring new research, to strengthening patient education and engagement.
One of the main focuses of the meeting was the revision of the group’s Do’s & Don’ts factsheets, practical resources that offer expert recommendations on living with lymphoedema. These have now been updated to address the specific needs of both healthcare professionals and caregivers. The group also explored ideas for new factsheets on topics like hair removal, tattoos, and travelling with lymphoedema. Work is also underway on a clinical flowchart for managing genital lymphoedema in children, which aims to provide clear guidance for healthcare providers.
The group reviewed patient education materials on physical activity and lymphoedema, including videos developed in collaboration with healthcare professionals and patient representatives. These aim to promote active lifestyles and are part of a growing collection of multimedia resources being made available to the community.
Discussions also addressed the psychological and sexual wellbeing of people living with genital lymphoedema—a topic often overlooked. Preliminary research shared by one of the centres highlighted the importance of addressing mental health in care pathways. Plans are underway to expand the study to include more patients and strengthen the evidence base.
The group also discussed future work around compression garments, with plans to improve shared understanding and highlight country-level differences. These efforts aim to inform more consistent care practices and raise awareness of patients’ needs across Europe.
Patient representatives continue to play an active role in the group’s activities. An illustrated colouring book for children with lymphoedema, developed to support understanding and coping, is being presented at international events and translated into multiple languages to ensure wider accessibility. Plans for new interactive tools are also in development.
The meeting concluded with updates on joint activities within the wider VASCERN network, including educational programmes, clinical guideline development, and cross-working group initiatives. With momentum growing, the PPL WG remains dedicated to improving care, education, and support for patients and families living with paediatric and primary lymphoedema.
A sincere thank you to all attendees for their active participation and continued commitment. We look forward to building on this progress in the months ahead.