News

Medical Knowledge and Developments

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.

Medical Knowledge and Developments

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.

PHIP Family Meeting Video

PHIP Family Meeting Video

Recently, the team of Dr. Wendy Chung published an article with the latest insights from the Natural History study.
The number of participants in the study is growing and with it the insight into the phenotypes of people with the syndrome.
These results were also presented in the annual online PHIP family meeting.
PHIP Family Meeting Video

Official Chung-Jansen Logo

Introducing the official international logo of Chung-Jansen syndrome, created by one of the parents of a child with Chung-Jansen syndrome.

“This logo represents strength in its boldness. It depicts that our people with CJS will reach the stars with the support of those around them. The DNA helix in the heart says that they are loved and can love themselves and their differences.”

PHIP Family Meeting Video

PHIP Family Meeting 2022

In this online presentation, Dr. Wendy Chung discusses the latest developments in her ongoing research into the abnormalities of the PHIP gene and answers questions from attendees. The main findings from a recently published article and a new small-scale study among parents/caregiver and adults with the syndrome into the psychopathology associated with the syndrome are discussed.

You can click on the link to view the full video of the Family Meeting on YouTube.

PHIP Family Meeting Video

PHIP Family Meeting 2021

Dr. Chung has held an online presentation about her ongoing study of the PHIP-gene abnormalities. She calls on patients or their parents/caregivers to register for her study and emphasizes the importance of participation. She also discussed the opportunity for patients in the United States to be enrolled in a study on a new medication against obesity, setmelatonide.

For detailed information about this study please visit the Research page

Outpatient Clinic Amsterdam UMC

Outpatient Clinic Amsterdam UMC

In Amsterdam UMC Sandra Jansen, clinical geneticist in training, and Agnies van Eeghen, physician for individuals with intellectual disability, started an outpatient clinic for children and adults with Chung-Jansen syndrome. For more information, please visit vumc.nl