Family Day 2026: Efteling
On 4 July 2026, it was time once again for our annual Family Day! This year, we once again chose Efteling, mainly because it offers attractions and activities for visitors of all ages. We deliberately organise our Family Day in July, when the park is open until 10:00 p.m., allowing families to make the most […]
Rare disease barometer
Improve Our Mental Health! June 2026 30 million people live with a rare disease in Europe. Alongside their families, they face physical and practical challenges but also a significant psychological burden. Recognising the rare disease community as a vulnerable population in mental health strategies is essential to deliver the care they need. This Rare Barometer […]
Blog Katie Allen June 2026
One reality of living with any chronic condition is that no matter how much you want to change the world and the future for people with your condition, you only have so much energy. There is a temptation to keep pushing through, that your goals are closer than they appear; however, if you push your […]
Family Weekend 2026
Looking Back on an Unforgettable Family Weekend in De Biesbosch – Saturday 23 & Sunday 24 May 2026 We had been looking forward to the annual CMTC-OVM family weekend, and it was a great success! Under bright sunny skies, young and old, Dutch- and German-speaking participants gathered in and around the beautiful Nationaal Park De […]
ISSVA 2026 – Philadelphia
The ISSVA (International Society for the Study of Vascular Anomalies) once again organized its international congress from May 19–22, 2026, in Philadelphia (USA). Approximately 700 participants attended in person, and, as in previous years, there was also an option to participate online. ISSVA is the leading global organization in the field of vascular malformations. The […]
Blog Arianna Faro June 2026
Never be ashamed of how you were born, no matter what anyone has to say. You are beautiful exactly as you are, and no one gets to decide your worth but you. This summer, I plan to wear my swimsuits, rock my scars, and live my life unapologetically. If someone chooses to make rude comments, […]
CORD Rare Diseases conference 2026
Our Patient Advocate Katie Allen has participated in this CORD conference on the 29th and 30st of April 2026 on behalf of our organisation. Day one of the conference started with a panel addressing questions about where we have come since the announcement of the rare disease drug strategy, and continued to look at the […]
Blog Katie Allen May 2026
Last month, I had the opportunity to attend the Spring Canadian Organization for Rare Diseases (CORD) Conference online. This is always a great opportunity to catch up with other rare disease organizations from across Canada and to see how political and economic conditions are changing access to care for rare disease patients in all provinces. […]
Family Day 2026: registration open
The registration for our international Family Day on the 4th of July in the Efteling is open! Register fast!
Approval alpelisib by EMA
EMA has recommended granting a conditional marketing authorisation in the European Union (EU) for Vijoice to treat adults and children aged 2 years and older with severe or life-threatening PIK3CA-related overgrowth spectrum (PROS) disorders. Read more