ePAG PPL Co-Chair
Manuela LOURENÇO MARQUES
Patient Advocate
Network
Pediatric and Primary Lymphoedema (PPL)
The Paediatric and Primary Lymphoedema (PPL) European Patient Advocacy Group (ePAG) is dedicated to advocating for patients living with paediatric and primary lymphoedema, ensuring that their voices are heard in VASCERN.
What is Paediatric and Primary Lymphoedema (PPL)?
Paediatric and primary lymphoedema is a rare condition where lymphatic fluid builds up in body tissues due to abnormal development or functioning of the lymphatic system. This can cause swelling, typically in the limbs, and requires lifelong management. Early diagnosis and ongoing treatment are essential for managing symptoms and improving the patient’s quality of life.
Meet the PPL ePAG Representatives
Manuela LOURENÇO MARQUES from Portugal and Alain PRADEL from France serve as the ePAG Co-chair and Deputy Co-Chair, respectively, for PPL, representing patient associations Associação Nacional de Doentes Linfáticos (andLINFA) and Association Vivre Mieux Le Lymphœdème.
ePAG PPL Deputy Co-Chair
Alain PRADEL
Patient Advocate
Other ePAG Representatives
Българска Асоциация Лимфедем (Bulgarian Lymphedema Association)
Violeta ANGELOVA
Patient Advocate
Other European Patient Organisations
Danish patient organisation for lymphedema (DALYFO)
Krabbameinsfelagið (KMF)
Suomen lymfayhdistys
Lymphoedème Family
Lymphoedema Ireland
Lega Italiana Lotta al Linfedema Aps (LILL)
Nederlands Netwerk voor Lymfoedeem en Lipoedeem (NLNet)
Norsk lymfødem- og lipødemforbund (NLLF)
Svenska Ödemförbundet (SÖF)
L-W-O Community
Lymphoedema Support Network