Sandra About Her Son Joshua

Sandra About Her Son Joshua

EXPERIENCE STORY Sandra About Her Son Joshua Joshua is 14 years old now and has been diagnosed with Chung-Jansen syndrome. He is adopted and we are in very close contact with his biological parents. Joshua’s mother also has the same syndrome.  When Joshua was...
PHIP Family Meeting 2021

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...
Jordan about himself

Jordan about himself

Experience story Jordan about himself Jordan Smelley has Chung-Jansen syndroom and uses his life experiences to help others as a peer support. http://davidsusman.com Home...
Christy about her daughter Eleonor

Christy about her daughter Eleonor

Experience story Christy about her daughter Eleonor Christy Leiter talks and writes about her daughter Eleonor who has Chung-Jansen syndrome on her instagram account and youtube channel You can read Eleonor’s story at...
Diana about her daughter Natalya

Diana about her daughter Natalya

Experience story Diana about her daughter Natalya Natalya Rose was born on April 10, 2009 . We got the diagnosis of PHIP related disorder / Chung-Jansen syndrome just a few years ago. Natalya has struggled her whole life having different kinds of psychological and...