Resources

PACS1 “Survival Guide”

This document provides a good initial overview for newly diagnosed families about what to expect. The publication is from 2016, and some items may require updating (a newer one is in the works!)

(2016, Rarechromo.org) Unique – PACS1-related Syndrome

Find your village – connect with us!

A Facebook group was formed by parents of the earliest diagnosed individuals. It is a place where families can share their stories, form lasting friendships, learn from, and support each other.  Membership is lilmited to day-to-day caregivers, in order to maintain a comfortable space where everyone can share.

Parents and Primary Caregivers Support Group

Follow us on Facebook

The PACS1 Smiles page on Facebook provides regular updates on events, research, various relevant articles, and snapshots into “a day in the life”. Like our page to see the posts.

PACS1 Smiles on Facebook