Information MEANS Health
Resources for patients and families
Phenylketonuria (PKU) is a hereditary metabolic disorder that requires rigorous management throughout life. To facilitate the understanding and management of the condition, the centres of the PKU.cat consortium have created and compiled educational and informative resources designed for patients and their families. Below, you will find useful materials covering everything from basic concepts to practical daily management tools.
Guides for managing PKU
Metabolic guide (Hospital Sant Joan de Déu)
This guide provides a detailed explanation of what PKU is, how it is diagnosed and treated, and what measures can be taken to manage it effectively. It includes dietary recommendations and advice for maintaining good metabolic control.
PKU-liarities (Hospital Clínic – IDIBAPS)
A document offering curiosities, interesting facts, and practical advice about phenylketonuria (PKU), designed to educate and entertain both patients and families. This resource combines scientific information with an engaging and accessible format for all ages.
Access the resource (in Catalan)
Heel prick test (Hospital Clínic)
The early detection of PKU begins with neonatal screening, known as the “heel prick test.” This test allows the condition to be identified in newborns and enables immediate treatment to prevent neurological and metabolic complications.
Stories and materials for kids
The PKU Friends’ Pact
A story designed to help children understand their condition in a positive and relatable way, through characters who share the same experiences.
Read the story (in Catalan and Spanish)
Pim the Lion
An illustrated story about a lion who learns to manage his condition, encouraging children to face PKU challenges with confidence.
Associations and community support
Associació Catalana de Trastorns Metabòlics Hereditaris
Provides psychological, social, and practical support to families living with PKU. The association also offers recipes, brochures, and activities to foster community interaction.
Fundación PKU-OTM
An organisation dedicated to providing support and resources to families affected by phenylketonuria and other metabolic disorders. The foundation promotes the dissemination of information, access to educational resources, and support for research to improve patients’ quality of life.
Asociación Española para el Estudio de los Errores Congénitos del Metabolismo
AECOM offers support to patients and families with inherited metabolic disorders such as phenylketonuria. Through their website, they provide educational information, practical resources, and spaces to connect with others affected by these conditions, fostering awareness and understanding.