Rare disease day 2025
On February 28, 2025, during the National Rare Disease Day Event at Soestdijk Palace, the prestigious Rare Angel Awards were presented to Karin Veldman, Rianne Oostenbrink, and 3FM Serious Request. National Rare Disease Day Event The National Rare Disease Day Event takes place every last day of February as part of International Rare Disease Day. […]
VASCERN Conference 2025 – Berlin
On February 10-11, 2025, the VASCA Winter Meeting brought together dedicated medical professionals, researchers, and patient representatives to share insights and collaborate on improving care for individuals with vascular anomalies. VASCERN is one of the European Reference Networks (ERNs) focused on rare multi system vascular diseases. As an organization, we are affiliated with both ERN […]
AIVA Conference 2025 – Austria
From March 7 to 8, 2025, the 15th Annual Conference of the Austrian Working Group for Interdisciplinary Treatment of Vascular Anomalies (AIVA) took place in St. Wolfgang am Wolfgangsee. This year, the event was held jointly with the 6th Annual Conference of DiGGefa (German Interdisciplinary Society for Vascular Anomalies e.V.). As the CMTC-OVM patient representative […]
WCRSD 2024 – Paris
For the second time, the World Congress on Rare Skin Diseases was organized in Paris from June 12 to 14. The number of attendees was around 400. This congress brings together doctors and patient representatives from around the world for rare skin diseases. There was a large representation of patient advocates from various countries in […]
EADV 2024 – Amsterdam
This year, the global EADV (European Academy of Dermatology & Venereology) conference was held in Amsterdam from October 25 to 28, 2024. The congress consisted of 180 sessions, more than 650 speakers, and over 17,000 participants from around the world. The CMTC-OVM delegation consisted of two people: Laurens Rorive and Lex van der Heijden. We […]
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 […]
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 […]
Rare disease day 2024
This year, our Patient Advocates from Canada, Austria and South Africa were active. On the final day of February, this year that was the 29th, Rare Disease Day is organised by the VSOP, the Dutch National Patient Alliance for Rare and Genetic Diseases. During the evening programme, the Rare Angel Awards were presented to three […]
PeDRA 2023 – Atlanta (USA)
Together with Naevus Global, we participated in the PeDRA (Pediatric Dermatology Research Alliance) conference in Atlanta (USA) from November 9 – 11, 2023. The Executive Director Dr. Mike Siegel invited us. PeDRA paid part of our travel costs and we were able to participate for free in the conference of almost 400 participants from various […]
