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Download the latest information and factsheets on Sanfilippo Syndrome.

Fact Sheets


The factsheets and information provided below are free of use under the Creative Commons Attribution-NonCommercial-NoDerivs 4.0 International license.




Understanding Genetic Risk


It is particularly important for families with children with Sanfilippo to understand their genetic history and to communicate genetic risk to relatives.


The Foundation has created this downloadble PDF factsheet for you to share with relatives so they understand their genetic risk and can seek genetic counselling and testing.



For most couples the chances of having a child with Sanfilippo are slim  about 1 in every 70,000 babies are born with Sanfilippo. However, if there is Sanfilippo in your family tree, the risk could be up to 180 times higher.