VASCERN News
23 July 2024
Revision of Rare Vascular Tumors in the Orphanet Database
The Pediatric and Primary Lymphedema Working Group (PPL WG)’s Spring Meeting, traditionally held face to face, took place online on June 12th, 2021. Chaired by Dr. Robert Damstra, it was attended by 10 healthcare professionals from 6 countries as well as five patient advocates from the PPL ePAG.
The afternoon meeting started with an update from the PPL ePAG, currently composed of 5 active patient advocates and 10 patient associations. Pernille Henriksen, ePAG Co-chair for PPL, mentioned that they are constantly working on enlarging the PPL ePAG and that the two main barriers stopping more patient organisations from joining are the time commitment and the English language barrier. They also briefly shared their highlights from the last year, including the manifest co-signed by 27 patient associations for World Lymphedema Day.
The group then discussed updates to be made to the PPL Patient Pathway and reviewed a new chapter to be added to the PPL Do’s and Don’ts, proposed by the patient community, on skin care. These should be finalised soon.
Following the success of the PPL WG’s first webinar on Infections and Lymphedema, which can be viewed here, the group is working on a flow-chart which presents the main points from the webinar in the hopes that this document can be widely shared.
Next up, the group was joined by special guest and former PPL WG member Dr. Vaughan Keeley to discuss the progresse of the pediatric lymphedema audit project. Most of the PPL members have already completed the audit tool and provided data from their centers and the preliminary results were presented. These results will be the basis for an upcoming publication in the European Journal of Medical Genetics.
After a few final updates on the pregnancy WG and the possibility of creating several thematic sub-WGs (on the topics of obesity and psychology), the general meetings ended and the health care professionals continued for a final hour of case discussions. The group discussed four complex patient cases, two from Germany and two from Belgium.
While the members of the PPL WG are eager to meet again in person, they still managed to make this virtual meeting a productive one and several new outputs from the group should be published on the website soon!