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.

Program (being developed)

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.

Time Presenter(s) Subject
08:30 – 09:00 Reception and registration
09:00 – 09:45 (m1) Lex van der Heijden Welcome, organisation affairs, interactieve survey
09:45 – 10:30 (p1) Dr. Kakha Bregvadze (Georgia)
09:45 – 10:30 (p2) Mireille Hermans, MSc (NL)
09:45 – 10:30 (p3) To be determined
10:30 – 11:00 Break with ‘vlaai’
11:00 – 11:30 (m2) Prof. Dr. Miikka Vikkula (Belgium)
11:30 – 12:15 (m2) Prof. Dr. Laurence Boon (Belgium)
12:15 – 13:00 (m3) Prof. Dr. Chantal van der Horst (NL)
13:00 – 14:00 Lunch
14:00 – 15:00 (p4) Johannes Verheijden (NL) What is listening?
14:00 – 15:00 (p5) Dr. Margaret Lee (USA)
14:00 – 15:00 (p6) To be determined
15:00 – 15:15 Change rooms
15:15 – 16:00 (p7) PGO Support What do YOU need? Help to increase the impact of our organisation!
15:15 – 16:00 (p8) To be determined
15:15 – 16:00 (p9) To be determined
16:00 – 16:15 (m5) Adjourn
16:30 – 18:00 (m6) Jodi Tung (Canada)

Amanda Starkey (USA)

Katie Allen (Canada)

Personal stories
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.

Further details will follow.

Register for this event



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    During the event photos and video recordings will be made. I agree that this material may be used for promotional purposes.


    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.

    Location Conference

    This year our conference will be held again at the International School of Philosophy.

    Landgoed ISVW
    Dodeweg 8
    3832 RD Leusden
    The Netherlands

    Information conference location

    Reservation hotel room(s): send an email to: reserveringen@isvw.nl 

    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: reserveringen@isvw.nl

    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

    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).

    Kids event

    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!

    Attention

    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.

    COVID etc.

    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.

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