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Guide for parents after diagnosis


You have a child with a (rare) disease and you do not yet have a (correct) medical diagnosis. But then, you finally get the medical diagnosis. And then …

What rages through you as parents? ”What does the future look like for our child and us? What can or can’t our child do later? What is the life expectancy of our child? What is the impact of this on our family? Will our child be able to live independently and have a nice life?” And so on.

This series of articles provides practical support to anyone who is dealing with a child who has a (rare / chronic) disorder.

The following main topics are described in this series:

  1. Introduction.
  2. A roller coaster of emotions.
  3. The impact on the entire family.
  4. What you can do yourself.
  5. All therapies in a row.
  6. How others can help.
  7. Additional information.

This series of articles was developed on the basis of ‘guide for parents after diagnosis’ by author Johannes Verheijden and with his permission. Johannes is one of our regular speakers and he is our workshop leader during our global member conference in the Netherlands.

The content of the articles is based on Dutch culture and social security. We realise that these may be different in other countries. However, we believe that most of the content can be applied in other countries and cultures.