The Pediatric and Primary Lymphedema Working Group (PPL WG) had its annual Spring Meeting on June 8th, 2022, in Brussels and online. Dr. Robert Damstra (PPL-WG Chair) and Prof. Sarah Thomis (PPL-WG Co-Chair) chaired the meeting, which was attended by PPL WG members including Pernille Henriksen, Co-Chair of the European Patient Advocacy Group (ePAG) for PPL, and Manuela Lourenço Marques, Deputy Co-Chair.
The VASCERN Project Manager led the group through recent project updates such as the hiring of an Education and Scientific Project Officer to support the Rare Diseases Working Groups, the new Bridging Grant project, and compensation for case discussions on the Clinical Patient Management System (CPMS). The group then discussed updates on the registries, including a presentation by VASCERN data steward Pim Kamerling on the minimum data set required for all the ERN registries and the addition of specific items for PPL. Pernille Henriksen led the discussion on patient organization efforts in various EU member states, ePAG expansion in Western and Eastern Europe, and a testimony from a patient who was able to receive care at an expert centre after watching one of the PPL Pills of Knowledge (PoKs) videos.
The group discussed how to improve the design and structure of webinars and PoKs, as well as the need for increased communication of PPL materials such as factsheets, PoKs, and patient pathways on social media. Following that, the group went over the medical texts for the upcoming eLearning Moodle platform that should soon be provided by the European Commission to create the ERN Academy on Rare Diseases. Over the next few weeks, the group will review these texts. In addition, the group intends to hold webinars on genetics, family planning, and pregnancy.
Finally, they talked about their pending journal publication that will be featured in the EJMG special issue on VASCERN. The spring meeting ended with many clinical case discussions.
The PPL WG was able to meet in person for a productive meeting. We are quite enthusiastic about the group’s new outputs that are on the way!