News

Recently an article was published describing the characteristics of 23 individuals with Chung-Jansen syndrome comparing the facial features with those of two other syndromes.

You can click on the link to view the full article as a PDF.

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.”

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.

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

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

Grown ups with the syndrome are welcome in Erasmus MC for multidisciplinair healthcare in the center for hereditary and congenital disorders, founded by Dr. Laura de Graaff.

https://erasmusmcfoundation.nl/

Chung-Jansen syndrome has been included in the database of rare diseases on the website of www.orphanet.nl !

In a research on childhood obesity three gene mutations have been found which contribute to obesity of which 1 is PHIP

https://www.cell.com

https://geneticobesitynews.com/

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.