Multiple days of meeting, learning, and connecting with fellow patients, doctors, and researchers from around the world. Attend in person in the Netherlands or join the speaker sessions online.
On Friday evening 6, Saturday 7 and Sunday morning 8 November 2026 we will host our annual global members’ conference in the Netherlands. Our guests are welcome from 20:00 on Friday evening for an informal welcome reception with traditional Dutch snacks and refreshments. The programme features a variety of interesting parallel sessions on a wide range of topics.
The American company Relay Therapeutics will be joining our conference to give a presentation entitled “What Are PIK3CA-Driven Vascular Malformations?”
This session is open to the public, so non-members are also welcome to attend. However, registration is required to help prevent spam registrations.
This is a hybrid conference: members can take part online as well as in person at our venue in the Netherlands. Online participants can attend the speaker sessions only, not the other parts of the programme.
The theme of our 2026 Members’ Conference is “Connecting.” This year, we want to create space for what matters most: sharing our experiences, learning from one another, and building meaningful connections. Instead of medical sessions, we will focus on exchanging knowledge, insights, and personal experiences.
Our “My Story” sessions are at the heart of this approach. They offer a warm and welcoming opportunity for people to share their personal journeys, learn from each other, and discover that they are not alone. Whether joining us in person or online, everyone has a story to tell, and every story matters.
On Saturday evening we will host a dinner buffet for all participants. This year we are once again organising activities on Sunday.
We will cover the cost of hotel rooms for all participants for both Friday to Saturday and Saturday to Sunday, including the breakfast buffet.
Welcome dinner
Welcome drinks with Dutch snacks and refreshments (ISVW bar)
Reception and registration
Welcome, agenda and members’ meeting
Lex van der Heijden
Dr. Patrick Kemperman NL
Everyone is watching … right?
About self-image, visibility, and living with a vascular malformation.
My story NL
People with vascular malformations and parents share their story.
Break with ‘vlaai’ (Dutch pie)
(Parallel) sessions
Dr. Patrick Kemperman ENG
Everyone is watching … right?
About self-image, visibility, and living with a vascular malformation.
Lunch
Relay Therapeutics EN
What are PIKC3A-Driven Vascular Malformations?
This is a public session! However, registration is required to participate, as we want to prevent spam.
Parallel sessions
People with vascular malformations and their parents share their story EN
At this moment, people living with a condition and their family members from eg the USA are sharing their stories online. We expect more participants to join us.
Workshop: taking photos with your smartphone NL / EN
Wim Robbertsen
Networking, Snacks and drinks
Dinner
Networking
Breakfast
Walk in the forest, debriefing and ideas for the 2027 Members’ Conference.
Lunch
End of conference
Works at Amsterdam UMC and Dijklander Hospital in Purmerend. A general dermatologist with two areas of expertise: psychodermatology and itch. He wants to bridge the gap between the treatment of physical and psychosocial challenges experienced by people living with a chronic skin condition.
Casey Geddes is the Director of Patient Advocacy at Relay Therapeutics. Relay Therapeutics is a small biotech company founded in 2016 that is focused on discovering and developing new medicines for both oncology and rare disease communities, including vascular anomalies, with significant unmet needs.
Register as a member, or as a speaker, board member or active volunteer.
We ask for this contribution to help cover the costs of the conference. It does not apply to speakers and active volunteers: for them, participation is free.
International School for Philosophy (Internationale School Voor Wijsbegeerte)
Dodeweg 8, 3832 RD Leusden
Centrally located in the Netherlands, close to the A28 motorway, free parking, near Amersfoort train station and set in the forest.
Room reservations: reserveringen@isvw.nl
| Room type | Price / night (incl. breakfast) |
|---|---|
| Comfort room, 1 person | € 122.50 |
| Comfort room, 2 people | € 137.50 |
| Suite, 2 people | € 165.00 |
| Extra bed (incl. breakfast) | € 25.00 |
| Breakfast, child aged 4–16, per day | € 8.25 |
Excl. local tourist tax. Comfort rooms are intended for max. 2 adults + 1 child up to and including 2 years old (no baby cot available).
Two family rooms (suites) are available at the ISVW Hotel. If these are already booked, please make an early reservation at a nearby Fletcher or Van der Valk hotel, as availability is limited.
This year, we will cover the cost of hotel rooms for both nights.
Belinda Toes offers free chair massages: relaxing, and according to previous participants also pain-relieving. You can sign up during registration. Places fill up quickly; people with vascular malformations are given priority.
Since 2023 we have recorded 19 interviews, subtitled in 5 languages. We are continuing this year: your interview is recorded in your own language and subtitled in several languages afterwards. Let us know you are interested during registration.
A separate room with guidance and entertainment. Crafts prove to be a great success for all ages, from children to grandparents. Bring boxes or bags to take your creations home.
For children and young adults who are less interested in the presentations, including the workshop “Taking photos with your smartphone” (Wim, for iPhone and Android, all ages).
Escapebus.
A workshop may be cancelled if there is insufficient interest.
Previously, participants could receive free personal medical advice during the conference. This option has been discontinued: we want to further improve the quality of medical advice and provide more sustainable healthcare, so that patients from abroad receive better care in their own country because their local doctor is well informed by the multidisciplinary medical team in the Netherlands.
Within Europe, many countries have expert centres for vascular malformations, so patients can often consult a specialist in their own country and in their own language. You can find an expert centre or patient organisation through a smartphone app from the European Reference Networks. Outside Europe, or in countries without an active expert centre, you can turn to the expert centres in the Netherlands.
Through the International Society for the Study of Vascular Anomalies (ISSVA) you can search worldwide for a multidisciplinary team or medical specialist by country.
Register as a member, or sign up as a speaker, board member or active volunteer.