04
Apr
2019

Malan syndrome

04
Apr
2019

Malan syndrome

Stories

Stories are written for and by people around Malan syndrome, so we know what we are talking about. We listen to all the stories, write them down and share them. And translate relevant news about Malan syndrome into readable articles. In this way we want to connect families, let them laugh and relax or give them just that little bit of support.

Because if there is something important for families with a care-intensive1 child like Malan syndrome, it is that the family remain upright. And that is what we, as community around Malan syndrome, are committed to doing with heart and soul.

Malan syndrome is a congenital disorder named after the French geneticist Malan who described this for the first time. Characteristics of Malan syndrome are a typical face, tall stature, disturbed speech and a impaired cognition which varies in severity.

We did not (yet) collect stories for Malan syndrome! Help by telling your story!   

  1. ^ care-intensive: a lot of care is needed. A care-intensive child is a child with a physical, mental or behavioural disability (or a combination thereof) that requires extra care.
    care-intensive: a word that we came up with, with which we focus on the experience of the care with Malan syndrome rather than the diagnostics.
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