Health care professional

Healthcare Professionals

Are you a healthcare professional such as a doctor or nurse? 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.

Medical information

Are you looking for medical information about vascular malformations? Check out our Pedia Do you have any questions/comments? Please contact us (contact form).

Global Team

We have a global team of consultants on medical, genetic and psychological specialists. Do you want to expand your knowledge/network? Do you also want to be part of our team?

Meet Patients And Their Families

Do you want to expand your knowledge and experience? Do you want to meet patients and their families to hear about their quality of life, what they struggle with (on a daily basis)? Do you want to improve your quality of care even further?

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.

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 has a public section and a member section. The member area contains a very large number of videos of presentations and reports. You can also become a member as a medical professional. We know from experience that patients and their families not only have medical challenges, but also psychological (e.g., self-image) and psychosocial challenges (e.g., at school and work). We have developed a large amount of information material about this in several languages.

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.