Parent

Are you the parent of a child with a (rare) blood vessel disorder (vascular malformation)? Then you’ve come to the right place! We are a global, non-profit, patient organization for people with blood vessel disorders. We have been around since 1997 and have so far built up a wealth of knowledge and experience. We have a worldwide network of people who have blood vessel disorders, as well as their families and a number of healthcare professionals.

Fellow sufferers contact

Connect and meet others with vascular disorders. Share knowledge and experience with others from all over the world. Meet in person and/or online.

Trustworthy

We have been active as a non-profit organization since 1997, have a large international network and work together with many other organizations such as the American and European organizations. In addition, we have a worldwide network of Patient Advocates in many countries.

Topical

We regularly update the information on our website and develop video material and brochures in many languages, among other things. We attend international (medical) conferences, are part of the European Reference Networks and have a worldwide team of (medical) advisers, which means that our information is up to date.

Do you already have a diagnosis?

Check out our Pedia for more information about your condition. If your condition is not listed in the Pedia, please contact us (contact form).

No diagnosis yet?

If you do not have a diagnosis yet, please contact us (contact form).

Centres of Expertise

In Europe, many expertise centres are united in an expertise network. We participate in several expertise networks and therefore have a large international network of medical specialists. In addition, we have contact with international centres of expertise and doctors via the ERNs.

Social Media

We have a social media presence on Facebook and Instagram. We use both private and public Facebook groups.

Website

Our website contains a public section and a member section. The member area includes a large number of presentations and reports. In our website we have also included a private Community for members only. For us, privacy of your data is our primary concern. In this Community area you can have contact with other members, including private conversations, sharing photos and much more. Not only can you read personal stories, but we also have ‘blogs’ in which personal stories are shared. You are welcome to write your personal story and regularly share a ‘blog’ article. We know from experience that you can not only have medical challenges, but also psychological (e.g. self-image) and psychosocial challenges (e.g. at school and at work). We have developed a large amount of information material about this in several languages. During our events you can discuss these topics with others.

Member events

One of our most important activities as an organisation is bringing together those people with a (rare) blood vessel disease, their families and healthcare professionals. We organize several international events for our members every year. At the moment these are the Family Days and member conferences. Here you can meet, share knowledge and experience and of course enjoy yourself. We try to continuously develop information material in multiple languages which you can find here (link). Are you missing any information or do you need information in a certain language? Please contact us (contact form).

Patient Advocacy

Our unique Patient Advocacy initiative aims to provide local support in as many countries as possible. Another goal of ours is to arrange local events in your own country and in your own language. Are you interested in becoming a Patient Advocate? You can find more information here. To summarise: By joining our organisation you can come in contact with other people with a (rare) blood vessel disorder and their families! With us you get the most up-to-date information available as well as personal support.