SGS Standard of Care Guidelines
We are proud to announce the publication of the first international Standard of Care guidelines for Schinzel-Giedion Syndrome (SGS), developed through a modified Delphi consensus process involving a panel of expert clinicians from across Europe and North America. This landmark document is a significant milestone for our global SGS community.
Empowering Families and Professionals
These guidelines are designed to empower and educate both medical professionals and families caring for individuals with SGS. They provide detailed, expert-driven recommendations on diagnosis, surveillance, treatment, and multidisciplinary care planning. Our aim is to help ensure every child with SGS receives optimal, coordinated, and proactive medical care.
Download the Guidelines
Plain Language Summary Announcement
We understand that the full medical guidelines may be overwhelming. A clear, accessible plain language summary is in development, designed specifically to help families understand the key care recommendations. This family-friendly resource is being prepared by Costello Medical, to whom we extend our sincere gratitude for their generous pro bono support.
Acknowledgement of Collaborators
We would like to thank all the clinicians who contributed to this collaborative project, as well as Costello Medical for their critical support in the guideline development process.
