Conference 2016

Register now for our first European Patient and Family Conference!

Register now!


We are delightful to invite you to our first European LGDA Patient and Family Conference in collaboration with the CMTC-OVM association (Cutis marmorata telangiectatica congenita – other vascular malformations).



The conference takes place on Friday November 11, Saturday November 12 and Sunday November 13.



The conference will be held at Hotel Leusden (Van der Valk)
Philipsstraat 18
The Netherlands
+31 33 434 53 45


  1. One person room including breakfast is € 74,50 per night.
  2. Two person room including breakfast is € 89,00 per night.
  3. Three person room including breakfast is € 113,50 per night.
  4. Four person room including breakfast is € 138,00 per night.

 Tourist tax will be added to these prices (€ 1,54 per person per night).
Baby beds are available for 7 euros extra.


How to get there

You have different options to get to the hotel.


– By car

The hotel is located 50 minutes by car from Schiphol Airport and offers free parking.

  1. Follow signs A4 Utrecht/Haarlem/Amsterdam.
    A4 becomes A10.
  2. Follow signs A1/E231 Almere/Amersfoort/Groningen Hengelo.
  3. Follow signs E30/A28 Utrecht and take exit 7 Leusden.
  4. Go left at Plesmanstraat.
  5. Go left at 1e dwarsstraat onto Philipsstraat.
  6. Go left.
    The hotel will be on your right.

– By taxi

Taxi Leusden offers transportation from and to Schiphol. The price is € 65,00 one-way with a maximum of 4 persons per trip. You need to make reservations in advance by phone (+31 33 82 00 226) or by email ( Provide your flight number and estimated time of arrival. If you need help, contact Ange van der Velden ( or +31 630 25 75 66).


– By train / bus / taxi

Public transportation takes you to the hotel in about 1,5 hours.

  • Take the train to Amersfoort (45 minutes).
    One-way train ticket Schiphol – Amersfoort is €10,20.

You can now:

  • Take bus 77 (Leusden Groenhouten) or 80 (Wageningen) and exit at Ursulineweg (25 minutes).
    Bus fare for this trip is € 1,42. It’s a 10-minute walk to the hotel.
  • Take a taxi to the hotel.
    Taxi fare from Amersfoort train station to the hotel is estimated at € 18,00.


– If you are in need of transportation, please let us know. We are working on car pool ideas.



Friday November 11

Time *
14:00 – 17:00
Pre-conference meeting for board members and volunteers
20:00 – 22:00
Meet & greet with volunteers and attendees at the hotel bar/grand café


Saturday November 12

In the time-table you can find the activities for this day.  Between 11:30 and 16:15 there will be parallel sessions offered with a variety of very interesting medical, social and psychological themes.

If you don’t want to follow (all) the parallel sessions, feel free to use the time to meet other patients and family members or just take a break. There will be a kid’s program parallel to the plenary and smaller sessions. (Grand)parents are welcome to watch and play with the (grand)kids at the kid’s room.

There will be a € 20,00 registration fee for adults (18 and older) to be paid during registration.


Time Room 1 Room 2 Room 3
09:00 Registration


09:30 Welcome
– Lex van der Heijden & Aaike van Oord
09:45 CMTC
– Lex van der Heijden
Lymphangiomatosis & Gorham’s Disease
– Dr. Jochen Roessler
10:45 Rare barometer voices
-Erwan Berjonneau (Eurordis)
11:00 To parallel sessions


11:15 – 12:30  WEVAR: from past to present. Blood vessel deviations
– Dr. Peter de Laat
The power of the patient
– Drs. Cees Smit
Workshop stress management
– Drs. Jos van Erp
12:30 Lunch


14:00 – 15:00  Workshop self image and self trust in visual difference
– Dr. Wouter van der Schaar
Genetics anno 2016: with research searching for new questions
– Dr. Maaike Vreeburg
Biobank for lymphatic tissue samples; what can patients do to help scientists?
-Prof. Dr. Leo Schutze-Kool & Dr. Peggy Manders
15:00 To parallel sessions


15:15 – 16:15 Blood and lymph vessel issues
– Dr. Hester Langeveld
Meeting German speaking persons
– Dirk & Jule Exner
Active yoga – Silvia Bongers
16:30 Closure
– Lex van der Heijden & Aaike van Oord
16:45 – 17:30  Snacks and drinks
* fresh and warm stroopwafels at parking lot
18:30 – 20:00  Pancake dinner


You can join us for a typical pancake dinner at an old farm nearby. We will try to carpool so everyone who wants to join, can! Adults pay € 17,00 and children 12 and younger pay €10,00. This is including drinks.


Sunday November 13 (LGD Alliance Europe only)

This morning you can enjoy your included breakfast from 8:00 until 10:30. After check-out we gather in the lobby at 11.30. Some of you may need to say goodbye already, others may join us for either a walk nearby through farmland or a visit to a Christmas market/Garden center across the hotel. At 13.00 we can meet for lunch for those who are interested (hotel or elsewhere at your own expense).

Time *
8:00 – 10:30 Breakfast and hotel check-out
10:30 – 11:30
Patient meeting with board and volunteers about the future of the LGD Alliance Europe
10:30/11:30 – 12:30
Parallel program; walk nearby through farmland or a visit to a Christmas market
12:30 – 15:00
Lunch and time for goodbye



You can reach the conference committee at At the conference, please call:

Tracy Milne:+77 65 40 81 01
Aaike van Oord: +31 624 11 30 25
Mireille Vorsselmans: +32 472 92 99 36
Ange van der Velden: +31 630 25 75 66

The conference committee is available for any questions or requests you may have.

* The time table might change slightly. After your registration you will receive a final version in your email.


In need of financial help?

Families in need of financial support in order to attend this conference can contact Tracy Milne at She and the rest of the committee will try to find a way to fund (parts of) your trip.


Registration form

Please fill in the form below and click on Submit to register for the conference. Registration closes at November 5th 2016.

1. Patient information


2. Contact information


3. Who is attending?

  • Other attendees

  • There will be a € 20,00 registration fee for adults (18 and older) to be paid during registration on Saturday.

4. Hotel stay


5. Extracurricular activities

    Friday evening drink

  • Dinner

  • Sunday activity


6. Other remarks