Home - News and Events - News - Highlights of the VASCERN Pediatric and Primary Lymphedema Working Group Spring Meeting 2024
June 03 2024

Highlights of the VASCERN Pediatric and Primary Lymphedema Working Group Spring Meeting 2024

PPL Spring Meeting 2024 (2)

Our Pediatric and Primary Lymphedema (PPL) Working Group held its highly anticipated Spring Meeting on May 23, 2024, in Amsterdam. 

PPL Spring Meeting 2024 (1)
PPL Spring Meeting 2024
PPL Spring Meeting 2024 (2)

This important gathering brought together healthcare professionals and patient representatives, all united to improve the lives of people with lymphedema. The meeting featured collaborative discussions, strategic planning, and updates on ongoing and upcoming projects aimed at enhancing patient care and advancing research.

Patient Involvement in Lymphedema

The meeting began with a warm welcome and a review of the day’s agenda. The first topic was the European Patient Advocacy Group (ePAG) projects. These updates highlighted the crucial role of patient involvement in shaping research and care initiatives for lymphedema. Next, the group discussed developing educational materials, including Pills of Knowledge (PoKs) and webinars. Videos focusing on physical activity for primary lymphedema patients have been recorded and will soon be available to educate and support the lymphedema community.

Progress on the PPL E-Learning Module and Taskforces

Significant progress was reported on the PPL e-learning module, a tool designed to offer structured and accessible education on primary lymphedema. Different members were assigned to revise various sections, ensuring thorough and efficient development. Updates were also provided on various task forces. The Pregnancy Working Group reported progress on the Delphi study, while the team focusing on Anoagranulomatosis Genitalis is developing outcome measures and case reports. The VASCERN Summer School was also spotlighted. This program, which received over 260 applications and selected 55 participants from 24 European countries, aims to provide comprehensive education on multisystemic vascular diseases.

Clinical Case Discussions and Registry

The importance of overcoming technical and legal barriers for the FAIR registry was emphasized, with a target to have 70% of new patients entered by 2027.  A session dedicated to sharing and discussing complex clinical cases fostered a collaborative approach to problem-solving and patient care.

Future Initiatives and Collaborative Efforts

The meeting concluded with a discussion on upcoming initiatives. These include developing new educational materials on diet and skincare, enhancing inter-ERN cooperation, and expanding clinical trials and research efforts. The group remains committed to improving patient pathways and ensuring that the VASCERN network continues to provide exceptional care and support for those affected by pediatric and primary lymphedema.

We extend our heartfelt gratitude to all participants for their invaluable contributions to the PPL Working Group’s ongoing success. Your dedication and collaboration are the driving forces behind our shared mission to improve the lives of those living with lymphedema.

For more information about the PPL Working Group and relevant resources, click here.

Skip to content