Schinzel-Giedion Syndrome Fourdation

Global Genes Global Advocacy Alliance member focused on rare disease support, education, advocacy, or research. The Schinzel-Giedion Syndrome Foundation, a registered UK charity, represents the approx. 120 SGS patients currently identified around the world. Our mission is to provide support to families caring for a child with SGS, raise awareness of SGS, and facilitate & support medical research that will help us find better treatments to improve the quality and length of life of children living with SGS. Directory information only; not medical advice, legal advice, or endorsement. Services and eligibility should be confirmed with the organization.