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 […]
Rare Disease Day 2026
On Rare Diseases Day, February 28, 2026, patient organizations, healthcare professionals, and policymakers came together for an inspiring and educational day. The conference focused on collaboration, looking ahead, and above all, learning from one another. New energy at VSOP The day immediately felt like a fresh start. VSOP is clearly embarking on a new chapter. […]
AIVA Conference 2026 – Austria
On March 6 and 7, 2026, the 16th Annual Conference of the Austrian Working Group for Interdisciplinary Treatment of Vascular Anomalies (AIVA) took place in St. Wolfgang am Wolfgangsee. A symposium held at one of Austria’s most beautiful locations. This naturally creates a blend of inspiration and focus—exactly what is needed to delve deeply into […]
CORD members meeting 2025
Our Patient Advocate Katie Allen attended the CORD membership meeting on behalf of our organization. The day started in Ottawa with the Rare Multiverse showcase and the opportunity for in-person members to interact and meet with members of parliament. This was not available to Zoom meeting members, but apparently was very successful. It provided different […]
EADV 2025 – Paris
The EADV conference was held in Paris from 17–20 September 2025. The total number of participants in Paris exceeded 20,000! In addition, it was also possible to participate online. On Monday, Lex travelled to Paris to take part in the Global Skin meeting on Tuesday. The position of Patient Organisations (POs) within the EADV has […]
ISSVA 2025 – Paris
The ISSVA (International Society for the Study of Vascular Anomalies) held another international congress from April 23–25, 2025, in Paris. A total of 410 participants attended in person and 162 online, representing 49 countries. ISSVA is the global organization in the field of vascular malformations. Photography and video recording of the sessions were not permitted, […]
Global Skin Foundation 2025 – Prague
From April 24–27, 2025, GlobalSkin hosted the Champion 2025 Conference, at the Vienna House by Wyndham Diplomat in Prague, Czech Republic. The event was attended by over 200 attendees including 163 skin patient leaders from 59 countries, along with speakers, industry partners, and key stakeholders. Themed “Champion”, the conference aimed to inspire, connect, and celebrate […]
Vascular Anomalies Patient Day 2025 – Argentina
On Saturday, April 12, 2025, the Interdisciplinary Center for Vascular Anomalies at Sanatorio Mater Deiis in collaboration with our CMTC-OVM organization organized a meeting ‘Vascular Anomalies Patient Day’ for patients, their families and healthcare professionals in Buenos Aires, Argentina. This was arranged together with our Patient Advocate Josefina and several local doctors. Because Lex attended […]
World Congress Pediatric Dermatology 2025
This was our first time attending the World Congress of Pediatric Dermatology. It was organized in Buenos Aires from April 7 to April 11, 2025. The number of participants was around 2,500 doctors from all over the world. During this congress, four of our advisors gave presentations, and doctors from many countries whom we know […]
VAC Conference 2025 – Berlin
In 2023, the ‘International Conference on Vascular Anomalies’ (VAC) was organized. In 2025, this conference was held again, this time in Berlin from February 11 to 14. Around 170 physicians, professors, researchers, and various patient organizations participated. The aim of the conference is to share the latest developments in research (basic, translational, and clinical) to […]