Co-creating a knowledge base in the “22q11.2 deletion syndrome” community

"Information-seeking behaviour in parents of children with 22q11.2 DS is complex."..... just like the condition itself! HCP's, please work with us to co-create this badly needed knowledge base. "Co-creating a knowledge base in the 22q11.2DS community" ht

"Living with their child’s condition engenders a sense of ‘lay expertise’ or ‘expertise by experience’ (Bradley 2016)." https://t.co/AhJQN0QmLt #livedexperience #notjustamum #parentexpertise