This website was created by a small group of parents of children with Potocki-Shaffer Syndrome with the aim of raising awareness of the syndrome, but specifically we hope to shine some light on the mystery off PSS for newly diagnosed families. We felt the lack of information and positive stories on the internet of those effected by Potocki-Shaffer Syndrome was severely lacking and what was documented can lead to more anxiety and frustration. Of course raising a child or caring for someone with special needs is often a tough challenge, but there is a wealth of joy that comes from our children that has not been documented in the community. If you are a friend or family member of someone with PSS we urge you to get in contact with us and make a connection with others who are working on the same puzzle...

All information on the website is purely for information purposes only and should not be taken as medical advice. We strongly advise using the information on this site as starting point for your own research and to use in discussion with your medical team.