04
Apr
2019

Malan syndrome

04
Apr
2019

Malan syndrome

Information

Our information is written for and by people around Malan syndrome, so we know what we are talking about. We search for information, rewrite them to be understandable and share them. And share relevant news about Malan syndrome by readable articles. In this way we want to inform families, make the feel empowered to educate the cure- and care-people 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.

waihonapedia.diseases.no.information  

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    • care-intensive: a lot of information is needed. A care-intensive person is somebody with a physical, mental or behavioural disability (or a combination thereof) and being seldom seen as Malan syndrome must get the special cure or care that most people do not know about,
    • care-intensive: Because of the rare aspect of Malan syndrome family members are often, (forced to be), the advocate that can help by being better informed as their cure or care providers,
    • 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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