What if your healthcare provider isn't properly informed about the Marshall-Smith Syndrome?

What if your healthcare provider isn’t properly informed about the Marshall-Smith Syndrome?

You can kindly refer them to the Standards of Care Marshall-Smith Syndrome. This describes what good care is for people with MSS. Healthcare providers and near ones of people with MSS have made these agreements together. The healthcare providers at the expertise centre AMC in Amsterdam are well informed of this standard of good care for MSS. Healthcare providers in other institutions may not be aware of this standard. They can find it in the library of the Dutch Healthcare Institute http://www.zorginzicht.nl or on the MSS Research Foundation’s website: http://www.marshallsmith.org. It is also important for the healthcare providers of the treatment centre in your area (who do not have extra knowledge on MSS) to communicate with the expert team at the AMC.