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 […]
New: VASCA magazine 2024!
A number of European patient organizations, working together in the European Reference Networks (such as our organisation), have published a second edition of the ‘VASCA’ magazine. Download and view online
Family Day 2024 Information and registration
Do you want to meet other families (again) and have fun together all day and evening? In addition to our Family Weekend in May 2024, we are again organizing our international Family Day in Efteling on July 6! An impression of a previous Family Day in Efteling can be seen below. Hopefully we will see […]