Annual report 2021 published

We have, once again, published our annual report and our annual accounts.

We would like to summarise a few points.

1. We are totally transparent. We display our financial figures, annual reports, Articles of Association, etc on our website. Not only is this required by law, but we want to do this as an organisation, too. We share the number of participants in events and photos/videos of these events (with permission, of course).
   We carry out various projects and we also share, among other details, the status and financial details of these projects.
2. We comply with the very strict European privacy laws (GDPR). We are not allowed to store any personal details on servers outside the European Economic Area. For example: USA legislation.
3. We hold the highest membership status (Platinum) with the National Organisation for Rare Disorders (USA).
4. Our finances are reviewed by our internal Finance Committee, the Dutch Ministry of Health, Wellbeing and Sport, an external accountant, and the Netherlands Fundraising Regulator (CBF).
5. We have a large team of advisors from various disciplines.
6. Our website is a large source of information and gives members the option to, amongst other things, make contact with each other and ask each other questions in a safe manner. The personal stories and the large quantity of information material, available in several languages, provide considerable support to patients, their families, and care providers.
7. We have accumulated an enormous amount of knowledge and experience since 1997. The babies from that time are now adults. Their acquired knowledge and experience are very valuable for other patients and their families.
8. We are of the opinion that one of the most important goals of a patient organisation is the sharing of knowledge and experience. With this in mind, we regularly organise public webinars.
9. Our Patient Advocacy initiative is unique. We will even pay the travel and accommodation costs for the Patient Advocate training in the Netherlands in 2022.
10. We speak multiple languages.

Annual report 2021