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 […]
