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 […]
Eurordis 2024 – Brussels
From May 15-16, 2024, Eurordis (the European Organization for Rare Diseases) organized a member conference in Brussels (Belgium). Around 400 participants attended in person and around 400 participants attended online. 15 May The meeting began with a video message from the Belgian Minister Vandenbroucke, in which he mentioned that around 30 million people with rare […]
Family Weekend 2024
On Saturday, May 25th and 26th, 2024, we organized our first international Family Weekend at StayOk in Apeldoorn, the Netherlands. A total of approximately 60 people attended from Belgium, Germany, the Netherlands, Austria, and Slovakia. In a beautiful forested area, we started on Saturday afternoon around 1 PM with a welcome reception. The children immediately […]
Please, don’t leave me behind!
Blog Katie Allen May 2024
I recently had an amazing appointment with a new specialist and while it can seem like a little thing, I have learned that the information my GP provides a new specialist, for a treatment, or while getting images done can make or break the visits and results. One example of this going very poorly was […]