We are working on an English translation of the Standards of Care MSS. This translation will be finished around May 2017.
The Standards of Care for the Marshall-Smith Syndrome are ready! We are very proud of this great document. Creating standards of care for the MSS fits the objectives of the MSS foundation. It is a logical step in the efforts to strengthen the position of the patient and giving advice and information to families. It is a result of efforts by Sonja Bracke and the Dutch umbrella organisation VSOP. The Fund PGO / Dutch Ministry of Health has funded this two-year program. The standard of care are now available as an interactive pdf in Dutch. Soon there will be an English version. We are now working on a patient version. We expect it will be ready in April 2017.
Download: Standards of Care (in Dutch)
Medical articles about MSS
The MSS Research Foundation and the Institute of Child Health from University College London have joined forces and decided to set up an initial research project to obtain detailed and reliable information on as many MSS children as possible, irrespective of where they live. The ultimate goal is to determine two things: What health issues arise as a result of MSS? And secondly, what are the causes of MSS?