Member conference 2022 Information and Registration
The agenda of and registration for our members conference in the Netherlands
On Saturday October 29 and Sunday October 30, 2022 we will organize our annual worldwide member’s conference in the Netherlands.
Our guests can already get to know each other on Friday evening 28 October during a drink, with all kinds of Dutch snacks, from 8 pm. The program contains interesting parallel sessions on a variety of subjects.
This year we will organize a ‘hybrid’ conference. This means that members can choose to participate online/virtual or be present in-person at our location in the Netherlands.
On October 26 and 27, we will also organize a training for our Patient Advocates from various countries such as Canada, Denmark, England, Greece, Austria, Poland, USA and Sweden. The costs of this training, including travel and accommodation costs, are covered by our organization.
On Saturday evening we will organize a dinner buffet for all participants!
This year there will also be a number of activities on Sunday.
Prof. Dr. Jan Peter Balkenende
Former Prime Minister, External Senior Advisor to EY, Professor Erasmus University, Ass. Partner Hague Corporate Affairs.
Dr. Yann Le Cam
Executive Vice President NORD – USA
Friday 28th of October
20:00 – 22:00 – Welcome with drinks and snacks (bar ISWV)
Saturday 29th of October
m1 = main room session 1, etc.
p1 = parallel session 1, etc.
|08:30 – 09:00||Reception and registration|
|09:00 – 09:45 (m1)||Lex van der Heijden||Welcome, organisation affairs|
|09:45 – 10:30 (p1)||Dr. Kakha Bregvadze (Georgia)||Georgia’s experience with rare genetic conditions: from diagnosis to empowering patients and families|
|09:45 – 10:30 (p2)||Dr. Alyson Norman (United Kingdom)||Living with a visible difference: The psychosocial impact of appearance-related distress and introducing the FaceIT@home tool|
|10:30 – 11:00||–||Break with ‘vlaai’|
|11:00 – 11:30 (m2)||Prof. Dr. Miikka Vikkula (Belgium)||What is new in genetics in vascular malformations?|
|11:30 – 12:15 (m3)||Prof. Dr. Laurence Boon (Belgium)||Vascular Malformations: where do we stand?|
|12:15 – 13:00 (m4)||Prof. Dr. Chantal van der Horst (NL)||What impact do pain and abnormal appearance have on patients with a vascular malformation?|
|13:00 – 14:00||–||Lunch|
|14:00 – 15:00 (p3)||Johannes Verheijden (NL)||What is listening?|
|14:00 – 15:00 (p4)||Dr. Margaret Lee (USA)||Comfortable In Our Skin: Strategies for Confidence and Success|
|15:00 – 15:15||–||Change rooms|
|15:15 – 16:00 (p5)||PGO Support||What do YOU need? Help to increase the impact of our organisation!|
|15:15 – 16:00 (p6)||Dr. Marije van Dalen (NL)||Living with a visible difference: putting together the pieces of a puzzle|
|16:00 – 16:15 (m5)||Adjourn|
|16:30 – 18:00 (m6)||Katie Allen (Canada)
Stefanie Gebele (Germany)
|16:15 – 18:30||–||Break with fresh ‘stroopwafels’ main entrance outside|
|18:30 – 21:00||–||Dinner|
Sunday 30th of October
Several members have indicated that they also want to participate in activities on Sunday.
Around 9:00 hrs breakfast, informal gathering and site-seeing. Lunch 12:00 hrs.
Register for this event
Personal medical advice
Previously, people could get free personal medical advice during our conference. This option is not available anymore for several reasons. An important reason is that we wanted to improve the quality of personal medical advice even further and also want to provide sustainable care. Sustainable care means that especially patients from abroad receive better care in their own country because the local doctor can be well informed by the multidisciplinary medical team in the Netherlands.
Within Europe, there are centers of expertise in the field of vascular malformations in many countries, so patients can often consult medical specialists in their own country and in their own language. European Reference Networks (ERN’s)
Finding an expertise center and a local patient organisation (regarding vascular malformations) is possible via a smartphone App
Outside Europe or in European countries where no expertise centers are active, it is possible to make use of expertise centers in the Netherlands.
Via the International Society for the Study of Vascular Anomalies (ISSVA) it is possible to search for a multidisciplinary team or medical specialist per country.
This year our conference will be held again at the International School of Philosophy.
3832 RD Leusden
Information conference location
Reservation hotel room(s): send an email to: firstname.lastname@example.org
Comfort hotel rooms are also available at this location, for which we have negotiated a special price of € 92.07 per night per comfort room. This includes breakfast.
These rooms are intended for a maximum of two adults and possibly a child up to and including 2 years old (baby bed). Baby beds are not available in the hotel.
A suite is a more spacious room where an extra bed can be placed. The suite costs € 115.00 per night for two people (including breakfast). An extra bed costs € 25.00 per night (incl. breakfast). Breakfast for children between 4 and 16 costs € 8.25 per person per day.
Local tourist tax is added to these prices.
For reservation at ISVW, please send an email to: email@example.com
The hotel room must be reserved and paid for by the user. Costs for no-shows will be charged to the person who requested the reservation.
Travel by car is rather easy using navigation. Parking is free.
Travel by plane chould be arranged where Schiphol Airport Amsterdam is the best location. Take the train to Amersfoort (direct connection). You need to buy tickets before entering the train. The train platforms are located below the arrivals area and you buy your train ticket at the blue and yellow machines near the entrance to the platforms.
When you leave the train station in Amersfoort you can see on the right side the bus stops. On the screens above the bus area, you can see the bus number (you should use number 19) and when the bus will depart (Mo-Fr from 7:18 – 18:43 twice an hour, approx. 22 minutes). You can also get a taxi of course (approx. 9 minutes).
During previous members’ conferences we have been able to offer free massages that not only had a relaxing effect but even provided pain relief for patients. Belinda Toes is the one offering the chair massages this year.
This year we offer chair massages. During registration upon entering the conference center you can simultaneously sign up for a chair massage.
Again we are organizing an extensive children’s event for children of practically all ages! We have a separate room with guidance and all kinds of entertainment for them. The tinkering turns out to be a great success for almost all ages, where 16-year-olds (and parents and grandparents) also have a lot of fun! The kids don’t go home empty-handed!
Young adults event
This year we are also organizing a young adults event (approx. 13 – 25 years). An activity is organized both in the morning and in the afternoon. In any case, bring outdoor clothing and sturdy shoes!
For our conference in 2020 we had arranged a photographer who takes professional photos. Unfortunately, this was canceled due to COVID-19, but this year it will continue!
If you want nice pictures of you, with or without others, you can have them taken. You will receive the photos by email.
In view of the costs of our conference, we ask our participants aged 18 and older for a contribution of € 10 per person who participates in the dinner. This does not apply to speakers and volunteers.
For the past two years, COVID-19 has prevented us from organizing a physical conference. At this time (August 2022) there are no restrictions in place in the conference center.
We cannot foresee what measures might be taken in the period up to and including our conference. This also applies to travel to and from the Netherlands. We strongly recommend that you keep a close eye on this.