‘We are the engine’: a focus group study on clinical practice guideline development with European patient advocates for rare congenital malformations and/or intellectual disability... by Mirthe Jasmijn Klein Haneveld, Chloé Aymée de Mortier, Anne Hugon, Martina Cornelia Cornel, Charlotte Maria Wilhelmina Gaasterland, Agnies Marguerite van Eeghen

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