How Schinzel-Giedion Syndrome (SGS) has changed our lives
Nuala Summerfield tells the story of her daughter's diagnosis of rare disease Schinzel-Giedion Syndrome (SGS) and setting up The SGS Foundation
Dr Charles Steward joins as “friend” of the UK Infantile Spasms Trust
Congenica's Dr Charles Steward joins the “friends” of the UK infantile Spasms Trust as an advocate and advisor
Our CHAMP1 journey
A father's story of having a son with a disease so rare that he is only one of 38 kids in the world to be diagnosed with Champ1, and what it means.