PACS1 (phosphofurin acidic cluster sorting protein 1) was discovered in 2011 in the Netherlands. You can read more about their research here.

In April 2012 PACS1 Siebe was featured Nature an International Weekly Journal of Science. You can read the “Gene hunt is on for mental disability” and learn more about Siebe here.

Currently there are no clinical trials involving the PACS1 gene. This site will update opportunities as they become available. However, the parents of children with PACS1 hope the more children who are diagnosed will lead to further research.

Any clinical investigator is encouraged to contact to discuss further studies.


2 thoughts on “Research


    J’habite en France et ma fille Eva vient d’être diagnosiquée “pacs1”, elle va bientôt avoir 15 ans.


    • Hello there! I’m having one of our PACS1 family members craft a proper welcome in French. Please send me your email to

      Bonjour! Je m’appelle Kerri. J’aimerais que l’un de nos membres de la famille PACS1 fasse un bon accueil en français. Veuillez m’envoyer votre adresse électronique afin que je puisse vous envoyer des informations sur le groupe de soutien familial


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