The picturesque city of Haarlem recently played host to the Pediatric and Primary Lymphedema (PPL-WG) annual spring meeting on April 13, 2023. The agenda was packed with presentations, case discussions, brainstorming sessions, and updates on ongoing projects. The group, including clinicians and patients, engaged in fruitful discussions, sharing their knowledge and experience to advance the understanding and treatment of primary lymphedema. It was a day that promised to be both informative and inspiring.
The morning session was dedicated to case discussions, where members of the group presented several cases of primary lymphedema. From the complexities of diagnosis to the nuances of treatment, the group delved deep into the cases at hand, offering insights, ideas, and solutions. Next up, the group discussed the common and clinical outcomes data set to be added to the PPL registry. The registry was discussed further with Pim Kamerling (VASCERN Data Steward). The registry is a digital platform for collecting and sharing patient data.
The group then participated in two brainstorming sessions on pregnancy in primary lymphedema and compression in children under one year old. Our experts had the opportunity to share their experiences and the need to pool their expertise together in treating women with primary lymphedema. For the second brainstorming session, the group discussed the challenges in the treatment and management of primary lymphedema in this age group.
After lunch, Gloria Somalo (VASCERN Education & Scientific Project Officer), Dr. Nele Devoogdt, and the group discussed the first draft of the patient pathway paper. The paper aims to provide a framework for the diagnosis, management, and treatment of primary lymphedema. The group provided feedback on the draft and discussed ways to improve and refine it. Gloria Somalo also presented the VASCERN Summer School program and discussed its validation with the group.
For the next session, Manuela Lourenço Marques (ePAG Co-Chair PPL-WG) gave a presentation on ePAG projects and updates, sharing some of the latest projects by ePAG advocates. Some updates include a meeting with the Swedish Minister of Health to raise awareness on lymphedema in the EU for World Lymphedema Day and a new website led by Eline Hoogstra (ePAG advocate PPL-WG) on compression in Europe.
As the day drew to a close, Julie Hallac (VASCERN Project Manager) updated the group on the latest developments in VASCERN including the new website, VASCERN Days, developing partners, and the new EU grant for the network.
The PPL Spring Meeting 2023 was a day of collaboration and progress. The group shared their expertise, discussed their ongoing and future projects, and explored new opportunities for improving the diagnosis, treatment, and management of primary lymphedema. The primary lymphedema community continues to thrive, with dedicated professionals and patients working together to advance the field and improve outcomes for all those affected by primary lymphedema.