Members

You can sign up as a member of our organization with the following main benefits:

1. Access to the entire website with a lot of video material including presentations and presentations.
2. Access to our worldwide conference in the Netherlands and, for example, to meet many other patients and families, free personal medical advice and many other possibilities.
3. Access to our worldwide Family Day in the Netherlands and in a fun environment to meet other patients and families.

Every year we organize various (international) events for members, as well as non-members. Below an overview of our main activities.

Our Family Day is a day for the whole family; for spending a relaxing day together and getting to know other patients and families, in an informal setting.

This day is particularly popular amongst our members and some families even drive more than 2500 km to attend!

In 2020, our Family Day was planned to take place in the Efteling but due to the Corona/COVID-19 virus, this cannot take place.

Announcements regarding the Family Day will be made via email to members, as well as social media channels and our homepage calendar.

Our global conference in the Netherlands, in a beautiful, quiet environment in the woods, is for many the time to get personal medical advice and obtain the most up-to-date information. It is also a time to have fun and meet other patients and families in a relaxed atmosphere.

Since 1997, we have been bringing people together and we have welcomed people from all over the world including Belgium, Brazil, Canada, Denmark, Germany, England, Greenland, Hong Kong, Japan, Norway, Slovakia, USA and Sweden.

Announcements regarding this conference will be made via email to members, as well as social media channels and our homepage calendar.

In 2020, we will initiate online webinars for members. These are intended to be a platform for members to meet each other and share knowledge and information from individual experiences, as well as from within our organization.

These webinars will allow members to stay up to date on recent developments and ask questions; for members who cannot be physically present at our conference, this will be an important way of keeping up to date.

Announcements regarding these webinars will be made via email to members, as well as social media channels and our homepage calendar.

In 2020, we will initiate online webinars for interested parties such as patients, families and care providers. These are intended to be a platform for knowledge and information sharing by individuals, as well as from within our organization.

These webinars will allow interested parties to be informed on all kinds of developments and ask questions.

Announcements regarding these webinars will be made via social media channels and our homepage calendar.