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.

23-25 juli Boston: Chung-Jansen Syndrome Family & Scientific Conference

23-25 juli Boston: Chung-Jansen Syndrome Family & Scientific Conference

Aug 9, 2026

From July 23 to 25, the first international conference for Chung-Jansen families was held in Boston. Children with CJS, their parents, and leading experts—including Dr. Wendy Chung, Prof. Dr. Mieke van Haelst and Dr. Lotte Kleinendorst—had the opportunity to share their experiences and expertise, and to meet and connect with one another both in person and online.Parents and their children also participated in workshops and contributed to the ongoing research conducted by Dr. Wendy Chung’s team (link to the research page). These activities helped establish many valuable connections for the future. In addition, there are many promising developments still to come in the field of CJS research. More information about the conference can be found on the organizers’ website: chung-jansen.org.
23-25 juli Boston: Chung-Jansen Syndrome Family & Scientific Conference

Brochure for Parents

Aug 9, 2026

Following the results of a practice-oriented study conducted among parents of children with Chung-Jansen syndrome, a brochure for parents has been published. The study was carried out in 2025 by Joyce Sonneveld, an applied psychologist and mother of a daughter with Chung-Jansen syndrome, as part of her graduation research for the PHIP outpatient clinic at Amsterdam UMC. The brochure is based on parents’ experiences in caring for and raising both young children and adults with Chung-Jansen syndrome. It is intended as a supportive resource and may offer parents and those around them both recognition and new insights.
The brochure can be downloaded here.
23-25 juli Boston: Chung-Jansen Syndrome Family & Scientific Conference

PHIP Family Meeting November 2024 Video

Nov 2, 2024

On November the 2nd another PHIP Family (video) meeting took place in which Dr. Wendy Chung discussed the phenotypes of the current research group and the different research projects PHIP is included in. She called on parents/caregivers or adults with the syndrome to join these research projects. You can watch the video here.
23-25 juli Boston: Chung-Jansen Syndrome Family & Scientific Conference

PHIP Family Meeting Video

Mar 12, 2024

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.
23-25 juli Boston: Chung-Jansen Syndrome Family & Scientific Conference

Official Chung-Jansen Logo

Oct 5, 2022

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.”

23-25 juli Boston: Chung-Jansen Syndrome Family & Scientific Conference

PHIP Family Meeting 2022

Sep 24, 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.

23-25 juli Boston: Chung-Jansen Syndrome Family & Scientific Conference

PHIP Family Meeting 2021

Sep 25, 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