Our collaboration with TREND Community to produce this Community Voice Report for Schinzel-Giedion Syndrome (SGS), has enabled the lived experiences and voices of our parents and caregivers to be uniquely captured. We are pleased to be able to make this report freely available for all to read.

This report unveils greater insights into the impact that a diagnosis of SGS has for the child and their family who love and care for them 24/7. It explores in detail topics such as the multisystemic nature of the condition, the symptoms of SGS that cause the greatest disease burden for the child and their family, the most frequently discussed medications, the aspects of SGS that parents and caregivers have the most questions and uncertainty about, and the various emotions expressed by parents and caregivers. Harnessing this real-world data in this way has enabled a more holistic understanding of what it living with this very rare genetic disorder truly means for a child and their family.

These unique insights will assist The Schinzel-Giedion Syndrome Foundation in our collaborations with clinicians and researchers to improve standards of care for SGS and accelerate the development and approval of new therapeutics to reduce disease burden and improve quality and length of life for our precious children.

You can download a copy of the Report below. Please share it with friends, family and medical professionals to help us raise awareness of SGS.