Members of the VASCERN Pediatric and Primary Lymphedema (PPL) Working Group were amply represented at the 11th International Lymphoedema Framework Conference, which took place in Nottingham from 13 – 15 June 2023.
On Thursday, June 15th, during the “Children and Young People” session chaired by Nele Devoogdt, Robert Damstra, the chair of the PPL working group, delivered a presentation on the Pediatric and Primary Lymphedema General Pathway. He also elaborated on the role and activities of the working group and VASCERN. Vaughan Keeley, a PPL guest member from the UK, presented the results of an audit conducted across expert centers, focusing on children with lymphedema. These results were recently published in a special issue of the European Journal of Medical Genetics. You can read the article here.
Other notable presentations included the children’s LIMPRINT study in Denmark by Susan Nørregaard and the challenges of compression in children with primary lymphedema by Nele Devoogdt. In other sessions Tanja Planinsek Rucigaj and Sarah Thomis presented on secondary lymphedema, and Tonny Karlsmark chaired the session on “Compression”.
Patients were also well represented at the conference, with a dedicated patient day attended by representatives from both the English and Bulgarian PPL patient associations. Eline Hoogstra, the Dutch PPL ePAG advocate, presented a collaborative initiative between patient associations across Europe. This initiative was based on an awareness campaign for World Lymphedema Day and a dedicated survey gathering information from patients regarding their challenges in accessing compression garments. The results led to the creation of a dedicated website (www.compressionineurope.org) to support patients and caregivers on compression garments.
The theme of the conference was “Stronger Together” and it is safe to say that the continuous collaboration and sharing of best practice among those who work with patients with lymphedema and the patient associations does make a difference.
For more information and the complete program, please visit the conference website: 11th International Lymphoedema Framework Conference in Nottingham, June 2023 – International Lymphoedema Framework.