Paediatric & Primary Lymphoedema (PPL-WG)
The Paediatric and Primary Lymphoedema Working Group (PPL-WG) is one of the six Rare Disease Working Groups (RDWGs) within VASCERN. Our group brings together a multidisciplinary team of experienced healthcare professionals dedicated to improving the diagnosis, care, and quality of life of individuals living with primary and paediatric lymphoedema.
We also work closely with patient representatives to ensure our efforts reflect real patient needs.
About the group
Our members include dermatologists, vascular surgeons, plastic surgeons, physiotherpaists, and geneticists from across Europe. Together, we work to:
- Improve access to expert care
- Share best practices
- Promote awareness and education
- Develop clinical tools and resources
Leadership:
- Chair: Dr. Robert Damstra (Dermatologist, Netherlands)
- Co-Chair: Prof. Sarah Thomis (Vascular Surgeon, Belgium)
Patient Partnership:
We collaborate closely with the European Patient Advocacy Group (ePAG), with active input from Co-Chair Manuela Lourenço Marques, representing ANDLymph (Portugal), Deputy Co-Chair Alain Pradel, representing AVML (France), and other patient representatives from across Europe. Their voices shape our priorities, tools, and resources.
Collaboration across VASCERN:
We frequently partner with other Working Groups, such as the Vascular Anomalies Working Group (VASCA-WG), to improve care for patients with overlapping lymphovascular anomalies.
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