FAQs

Here are some commonly asked questions by newly diagnosed families or those learning about PACS1 for the first time.

What is PACS1 Syndrome? Information can be found here regarding this very rare syndrome.

How many PACS1 Children are there? As of September 2017 there are 60 children diagnosed. We believe with more as Exome sequencing becomes more accessible our numbers will see significant growth.

Can we cure PACS1? At the moment there is no treatment or cure for PACS1 Syndrome. However the research is ongoing.

What does having a PACS1 diagnosis mean for my child? PACS1 families have noticed a lot of commonalities with the children. As PACS1 is newly discovered and little is known, parents have found that by sharing their stories they receive hope and validation of the therapies they have engaged.  We know the possibilities are endless for our PACS1 children.

Will my child with PACS1 …. (walk, talk, jump, laugh)? Yes! We believe in our PACS1 children.  Their skill levels are all different. For example, most of our children can communicate but it is how the communication is done that is different (verbal, PECS, sign language). Most children can ambulate, but they have spent hours in physical therapy. Read Our Stories to learn more.

I am interested in participating in research, where do I sign up? Please contact Farhad at PACS1Information@Gmail.com

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