ISSVA 2024 – Madrid
From May 7-10, 2024, ISSVA (International Society for the Study of Vascular Anomalies) organized a conference in Madrid, Spain. Approximately 800 participants attended in person, and around 200 participated online. On the first day, topics covered included vascular tumors, vascular malformations, pathology, interventional radiology, and surgery. The second day delved deeper into vascular tumors and […]
Naevus Outreach 2024 – St. Louis (USA)
This year, the Nevus Outreach conference took place in Saint Louis, Missouri. Representing Nevus Netwerk Nederland (NNN), Janine van den Eijnden (NNN buddy) and Marjolein van Kessel (NNN board member) attended the congress. What does Nevus Outreach do to be successful? What inspires us? What information and experiences are we bringing home? Marjolein and Janine […]
Agenda and Registration for Members’ Conference Netherlands 2024
It’s time once again for our Global Members’ Conference in the Netherlands 2024! The conference begins on the evening of Friday, October 25th, and concludes after lunch on Sunday, October 27th. This year, we have another very diverse agenda with various speakers, a panel to answer your questions, chair massages, excellent lunch and dinner buffets, […]
Blog Katie Allen August 2024
One of the most obvious changes when moving from pediatrics to adult care is the changes in the hospital experience. This is a topic that in British Columbia, Canada is something that medical professionals are trying to address but seem to be having a hard time addressing the transition from a truly patient perspective. It […]
Help Matthias, who has a port-wine stain
Hi everyone! 🤍 My name is Matthias, and I was born with a port-wine stain. This personal experience has inspired me to pursue a career in dermatology, where I hope to give back to the amazing community that has supported me. As part of my studies, I’m conducting research on the psychological and social impacts […]
Family Day 2024: Efteling
On Saturday, July 6th, participants gathered around 9:30 AM at the bus parking lot near the Efteling. In total, nearly 80 people from Belgium, Germany, and the Netherlands were present. The weather was cloudy, and there was a bit of rain at the beginning, but the sun soon came out. All attendees received a bag […]
Argentina – Josefina Obiglio
My name is Josefina Obiglio, I live in Argentina and have been working in Human Resources since 2005. I am married to Ignacio and together we have 3 children. Our oldest was born with the Klippel-Trenaunay vascular malformation. From the beginning, our goal was to create an interdisciplinary team that would guide and support us. […]
Blog Katie Allen July 2024
The transition from pediatric to adult care – Transfer of medical records One major challenge in Canada with a rare disease is the transition from pediatric to adult care. My transition was, unfortunately, not a resounding success, and I would love for my failures to be learning opportunities for others, rather than just the stumbling […]
Blog Katie Allen June 2024
It has honestly been a rough month here, and I figured writing about it may help so please bear with me, as it is likely to be very stream-of-consciousness. About four-and-a-half years ago my father passed away after a brutal fight with cancer, at the time Mom and I put everything on hold to care […]
Blog Ami Hataya June 2024
Nice to meet you. My name is Ami from Japan. I’m a patient advocate at the CMTC-OVM organisation. I was born with Cutis Marmorata Telangiectatica Congenita (CMTC) on the left side of my body and my entire left arm. As I grew up it has improved slightly to where I now have it only on […]