SGS Family Conference August 12-14th 2022 This will be a virtual event on Zoom from 12-2 pm ET / 5-7 pm UK / 6-8 pm CET (2 hours per day over three days)Families, other Caregivers and Health Professionals are all welcome! Day 1: Friday 12th August (times are in Eastern Time) 12:00 – 12:30 pm…

Dana BradleyMy husband Richard and I are parents to our son, Alex.  We live in New York City.  Until recently I worked in Human Resources at JPMorgan Chase, a leading financial services firm.  After a 25-year career in the fast-paced New York finance industry, I decided I wanted to use my skills as a leader,…

The Schinzel-Giedion Syndrome Foundation is Appointing New Trustees The mission of The Schinzel-Giedion Syndrome Foundation is to provide support to families caring for a child with Schinzel-Giedion Syndrome (SGS), to raise awareness of this very rare genetic condition and to facilitate and support the vital medical research that will help us find better treatments to…

https://www.newswise.com/articles/grant-helps-uah-s-baudry-lab-research-protein-s-interactions-in-so-called-orphan-diseases

Dr. Jessica Duis, M.D.Dr Jessica Duis is a pediatric geneticist and special care pediatrician at Children’s Hospital Colorado. She did her training at Johns Hopkins in Baltimore, MD, where she focused her work on epigenetic disorders. She has built multidisciplinary Centers of Excellence across the United States with a focus on patient care, establishing standards of…

The Schinzel-Giedion Syndrome Foundation is a member of COMBINEDBrain In January 2020 The Schinzel-Giedion Syndrome Foundation joined COMBINEDBrain, a non-profit consortium of 25 patient-advocacy groups, each representing a different rare genetic neurodevelopmental disorder. COMBINEDBrain’s mission is to speed clinical trial readiness for severe cognitive disorders by pooling resources and working together across all of our…