Skip to content
Expertise Centre for Rare Heart Conditions Amsterdam UMC
NL EN

Patients · Expertise centre

The conditions we treat

Rare means few people have your condition — not that little is known about it. We bring that knowledge together in three groups.

Three focus areas

  • Rare cardiac disease

    The heart is built differently from usual. We work out what that means for you, which follow-up is needed, and what can be done about it.

    Your visit
  • Rare cardiac rhythm disease

    The heart beats too fast, too slowly or irregularly for an inherited reason. It often runs in a family, even if nobody has named it that way yet.

    Your visit
  • Rare cardiomyopathy

    The heart muscle itself is affected. We look at the cause, at treatment, and at whether relatives are at risk.

    Your visit

How we reach a diagnosis

  1. 1

    History and family

    What you notice, what has already been investigated, and whether heart conditions or sudden death run in the family.

  2. 2

    Heart tests

    ECG, echo or other imaging. Not every test is needed for everyone; we choose what fits your situation.

  3. 3

    Genetic testing

    Only where it adds something. A test can show a cause, but a result with no variant found does not always rule out an inherited cause.

  4. 4

    Multidisciplinary review

    Your case is discussed by cardiology and genetics together. Then you hear what the next step is.

Inheritance, in short

Not every rare heart condition is inherited. Some are, and where that is the case we look with you at whether relatives are at risk — before anything happens.

A genetic test is not obligatory. We discuss beforehand what a result can and cannot say, and what that would mean for you and for your family.

Your visit
Herengracht in Amsterdam (Dietmar Rabich, CC BY-SA 4.0)

Questions about inheritance

Is my condition inherited?

Not always. Some rare heart conditions are. We only say so after we have looked at your history, the tests and, where useful, a genetic result.

What does a genetic test mean?

A test can show a cause, but not always. A result with no variant found does not rule out an inherited cause. We explain that before you decide.

Should my children be tested too?

Sometimes. It depends on the condition and on what the test shows. Nothing happens without us discussing it with you first.

Will I be treated here, or by my own doctor?

Often both. We make the plan; it is carried out by your own cardiologist wherever possible. For rare procedures you come back to Amsterdam UMC.

Questions about your own situation?

This page describes what we treat, not what that means for you personally. That is what the visit is for.

Your visit