Report from the 10th International Conference of the International Lymphoedema Framework!

The 10th International Conference of the International Lymphoedema Framework (ILF) took place from the 18 – 20 November 2021 in Copenhagen, Denmark. We are happy to report that both the patient advocates as well as healthcare professionals from the Pediatric and Primary Lymphedema Working Group (PPL WG) were largely represented at this international event! More than…

Continue reading

Recording of the VASCERN webinar: Diagnostic and Management Pathway for Severe and/or Rare Infantile Hemangiomas now available!

The VASCERN webinar: Diagnostic and Management Pathway for Severe and/or Rare Infantile Hemangiomas took place on November 23rd, 2021. This informative webinar was presented by Dr. Andrea Diociaiuti, Vascular Anomalies Working Group (VASCA WG) member and dermatologist from Bambino Gesù Children’s Hospital, I.R.C.C.S, in Rome, Italy. It started with a detailed…

Continue reading

EURORDIS Photo Awards 2022

Do you have a photo that captures life with a rare disease that you would like to share with the world? Submissions for the EURORDIS Photo Award are now open! This is an opportunity to visually express what it means to live with a rare disease and at the same…

Continue reading

New Nature Reviews Disease Primer on Primary Lyphedema

A new collaborative review paper on Primary Lymphedema has just been published in Nature Reviews Disease Primers and is co-authored by Dr. Robert Damstra (Pediatric and Primary Lymphedema (PPL) WG Chair) and Professor Miikka Vikkula (Vascular Anomalies (VASCA) WG Chair). Find the article here Access the “Prime View” illustration graphic here From basic science to a clinical description…

Continue reading

Research News: A VASCA WG study on efficacy of sirolimus in patients requiring tracheostomy for life-threatening lymphatic malformations of the head and neck

A new publication entitled Efficacy of Sirolimus in Patients Requiring Tracheostomy for Life-Threatening Lymphatic Malformation of the Head and Neck: A Report From the European Reference Network has just been published in Frontiers in Pediatrics. It is co-authored by members of the Vascular Anomalies Working Group (VASCA WG) and presents…

Continue reading