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Questionário sobre acondroplasia
Desenhámos um questionário com o objetivo de conhecer a população ligada à acondroplasia.
O questionário é opcional e anónimo. Os dados obtidos serão usados para cálculos estatísticos e para perceber melhor a história natural da acondroplasia.
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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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Obrigado.