Now that the gene abnormalities associated with Chung-Jansen syndrome have been known for some years, PHIP pops up in more studies. However, much is still unclear about the impact of the various abnormalities in the gene on (psychological) health. There is an increasing need for multidisciplinary help for patients with the syndrome. Because there is no expertise center or clinic of their own, patients are dependent on help elsewhere.
All news about (medical) knowledge about PHIP and the appropriate care is listed here.
For detailed information about this study please visit the Research page
PHIP Family Meeting
Dr. Wendy Chung shares findings from ongoing PHIP-related syndrome study and answers questions from families. Dr. Sandra Jansen shares findings from another PHIP cohort and describes some broader ongoing research by her group relating to neurodevelopmental disorders.
You can click on the link to view the full video of the Family Meeting on YouTube.