Foundation – about us
“We believe that everyone with Koolen-de Vries syndrome should have the chance to develop as well as possible and participate in society.”
We are a foundation committed to people with Koolen-de Vries syndrome (KdVS) and their families. The syndrome is rare. As a result, many healthcare providers, schools and organisations do not yet know it well. Families therefore often have many questions and sometimes have to search for information and help themselves.
Our foundation wants to connect families with each other. We want to offer a place where people can share experiences, knowledge and support. Through contact with other parents and people involved, many families notice that they are not alone.
We also want to spread more knowledge about KdVS. We do this by supporting research, sharing information and working together with healthcare providers and other professionals. We also draw attention to what people with this syndrome need.
In this way we want to contribute to better care, appropriate support and more understanding in society.
Together we build a strong network in which people with KdVS and their families feel supported.
Would you like to contribute? You can support us by donating or taking part in activities. Follow us also on Facebook and Instagram to stay involved and informed about our activities.
What we do
- Connect families with each other.
- Share reliable information about KdVS.
- Support research, awareness and collaboration.
Founding of the foundation
It’s official! On 23 December 2025 we founded Stichting Koolen-de Vries. We are very proud of this.
The foundation was founded to promote peer contact, provide reliable and accessible information about Koolen-de Vries syndrome, support scientific research and increase awareness of the syndrome.
These goals also form the basis of the policy plan below.
Policy plan Stichting Koolen-de Vries Syndrome
Date: 23-12-2025
This policy plan is valid indefinitely
1. Objective
The foundation aims to:
- a. promote peer contact;
- b. provide reliable and accessible information about Koolen-de Vries syndrome;
- c. support scientific research into Koolen-de Vries syndrome;
- d. increase awareness of Koolen-de Vries syndrome;
- e. perform everything related to or conducive to this.
The foundation serves the public benefit and has no profit motive.
2. Activities
The foundation seeks to achieve its objective, among other things, by:
- organising a patient day for people with Koolen-de Vries syndrome and their loved ones, focused on meeting, knowledge sharing and peer contact;
- managing and maintaining an informative website with reliable and current information about Koolen-de Vries syndrome;
- sharing information and increasing awareness through online communication and social media;
- financially supporting scientific research into Koolen-de Vries syndrome;
- carrying out all other activities that contribute to achieving the objective.
3. Working method and target group
The foundation’s activities are aimed at:
- patients with Koolen-de Vries syndrome;
- parents, relatives and other directly involved people;
- healthcare professionals and researchers;
- society more broadly, with a view to awareness.
The foundation works mainly with volunteers and carries out its activities nationally.
4. Board and remuneration policy
The board of the foundation consists of 3 board members. Board members do not receive remuneration for their work.
Any expenses incurred in the context of board activities may be reimbursed on the basis of actual costs, provided they fit within the foundation’s objective.
The foundation has no employees.
5. Asset management
The foundation’s assets are held in a bank account in the name of the foundation.
The assets are managed carefully and prudently and used exclusively to achieve the objective.
The foundation does not aim to build up assets without a specific purpose.
6. Financial policy
Income
The foundation’s income consists of:
- donations and gifts from individuals;
- fundraising, especially through social media;
- possible grants or other contributions.
Expenses
The funds obtained are spent exclusively on achieving the foundation’s objective. Expenses include:
- costs for organising the patient day;
- costs for developing, maintaining and hosting the website;
- bank and administrative costs;
- costs for communication and fundraising.
Any surpluses are reserved and designated for supporting scientific research into Koolen-de Vries syndrome.