About This Site
After receiving the diagnosis of Chung-Jansen Syndrome, patients or their parents/caregivers are often left with questions like ‘what do we do now?’ and ‘what will the future look like?’.
This website was created to provide support for families and loved ones of people effected by a PHIP related disorder. It aims to give specific, up-to-date information about what the syndrome is and where patients or their parents/caregivers can go to when they have questions about the syndrome or want to get (health)care. This website also tries to give insight into ways of dealing with possible health and/or behavioural problems.
In the past two years, the number of people diagnosed with the syndrome has increased to more than 400 worldwide. This number will continue to grow as more people are tested.
Many patients or their parents/caregivers have joined the international Facebook group PHIP Kids (Chung Jansen syndrome). Within the group, patients and/or their parents/caregivers share information and experiences with each other, and provide support in dealing with daily challenges.
There are also a Dutch and a German Facebookgroup which have the same goals (to unite parents or people with the syndrome) but with the main focus on which is happening in those countries .
PHIP Kids is in constant communication with the lab of geneticist Dr. Wendy Chung at Columbia University Medical Centre in New York City, where ongoing research is being done on PHIP gene variations.
Because the discovery and testing for the syndrome is still pretty new, there is a lot to learn about the how, what and why of the syndrome. It is therefore desirable that in addition to research in the United States, further research is also carried out here in the Netherlands or Europe.
For additional information about the syndrome or this website please contact info@chungjansensyndrome.eu
You are welcome to share any information on the syndrome that can be usefull such as (research)projects PHIP is involved in.