Members’ conference 2024 Information and Registration

On the evening of Friday, October 25th, Saturday, October 26th, and the morning of Sunday, October 27th, 2024, we will be hosting our annual global members’ conference in the Netherlands.

Our guests can start getting to know each other during the Friday evening social gathering, featuring various Dutch snacks, starting at 8 PM. The program includes interesting parallel sessions on a variety of topics.

This is a ‘hybrid’ conference, meaning that members can participate both online and at our location in the Netherlands.

On Saturday evening, we are organizing a buffet dinner for all participants!

This year, we will once again be hosting a number of activities on Sunday. We will pay per family one hotel room from Saturday to Sunday (incl. breakfast buffet)!

“Living loss” is a term that refers to the ongoing emotional pain and grief experienced by individuals who have a loved one with a chronic or severe medical condition, disability, or mental health issue. This concept highlights that the loss felt by family members or caregivers is not limited to the death of the person but continues throughout their life due to the challenges and changes brought about by their condition.

Living with someone who has a long-term or debilitating condition can be both emotionally and physically exhausting. The feeling of loss may arise from altered expectations for the future, the loss of the person as they were before the illness or disability, and the constant adjustments needed to meet the person’s needs. Caregivers may experience grief, frustration, sadness, and a range of other emotions as they navigate the complexities of providing care and support.

Recognizing and understanding the concept of “living loss” is important because it validates the emotional struggles of caregivers and family members. It underscores the need for support and resources to help them cope with the ongoing challenges they face in caring for their loved one.

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.

A suite is a larger room where an additional bed can be placed. The suite costs €149.00 per night for two people (including breakfast). An extra bed costs €25.00 per night (including breakfast). Breakfast for children aged 4 to 16 costs €8.25 per person per day.

Local tourist tax is not included in these prices.

To make a reservation at ISVW, please send an email to: reserveringen@isvw.nl

The hotel room must be reserved and paid for by the guest. Costs for no-shows will be charged to the person who made the reservation.

We will pay per family one hotel room from Saturday to Sunday (incl. breakfast buffet)!

During previous members’ conferences, we were able to offer free massages that not only provided relaxation but also relief from pain for patients. This year, Belinda Toes will be providing the chair massages.

We are offering chair massages again this year. You can sign up for a chair massage while registering upon arrival at the conference center.

During our members’ conference in 2023, we recorded a series of interviews which can be found on our website. We will be doing this again this year.

If you would like to participate in an interview, please let us know during registration.

The interview will be recorded in your own language and then subtitled in multiple languages.

The original idea was to organize a creative event for children of nearly all ages. For this, we had a separate room with supervision and various entertainment. Crafting has proven to be a big success for nearly all ages, with 16-year-olds, adults, and even grandparents having a lot of fun! Participants don’t leave empty-handed!

This year, we are also organizing a young adults’ event (approximately ages 13 to 25 years of age). Activities will be held both in the morning and in the afternoon. Be sure to bring outdoor clothing and sturdy shoes!

Given the costs of our conference, we ask participants aged 18 and older to contribute €10 per person for those attending the dinner. This does not apply to speakers and volunteers.