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Encuesta sobre la acondroplasia
Hemos diseñado un cuestionario con el objetivo de conocer la población afectada o cercana a la acondroplasia.
El cuestionario es opcional y anónimo. Los datos obtenidos serán usados para cálculos estadísticos y para poder tener una mejor percepción sobre la historia natural de la acondroplasia.
Por favor, considere e intente responder. Si usted desea responder a las preguntas más tarde, puede presionar el botón en la parte superior "Inscribirse en BA"

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The EAF is a network of achondroplasia specialists


The aim of the European Achondroplasia Forum (EAF) is to improve overall care for individuals with achondroplasia through establishing and promoting collaboration between experts, cross-country sharing of best practices, development of recommendations and supporting the development of educational programmes.


Workshops


The EAF holds Workshops called "Developments in Achondroplasia" that focus on particular areas of achondroplasia management. Experts are invited to lead discussions and share knowledge and experience.

The first workshop “Achondroplasia Management: Guiding Principles of Care” resulted in the publication of “The First European Consensus on the Principles of Management for Achondroplasia” in the Orphanet Journal of Rare Diseases. To view the discussions, download slides, or access the publication, click here.

The second Workshop "Managing Achondroplasia into Adulthood" discussed the process of transition from paediatric to adult care and how achondroplasia is managed in adulthood, as notice by Beyond Achondroplasia here.

 

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