Publications

The IAF has developed several manuscripts through the combined expertise of our international Steering Committee and members, including guiding principles for care, practical considerations in the management of adults and the measurement of outcomes in clinical practice. Our work reflects a collaborative, multidisciplinary approach and is intended to promote consistency of care, improve patient outcomes, and encourage global best practice.

Publications

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Showing 3 results for “Alves I”.

March 2025
Publication thumbnail: Recommendations for management of infants and young children with achondroplasia: Does clinical practice align?

Recommendations for management of infants and young children with achondroplasia: Does clinical practice align?

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Guillen-Navarro et al. explored awareness of and alignment with international recommendations for achondroplasia, and how closely recommendations are followed in clinical practice. Results from two surveys showed high awareness among clinicians, but lower awareness among parents of children with achondroplasia. This paper highlights opportunities to improve consistency in care and raise awareness across the achondroplasia community.

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August 2022
Publication thumbnail: Optimising care and follow-up of adults with achondroplasia

Optimising care and follow-up of adults with achondroplasia

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The EAF undertook exploratory surveys to improve our understanding of the care that adults with achondroplasia receive, and the period of transition from paediatric to adult care. Some key barriers to optimal care emerged; identifying and overcoming these is crucial to improving the care of adults.

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July 2022
Publication thumbnail: Optimising the diagnosis and referral of achondroplasia in Europe: European Achondroplasia Forum best practice recommendations

Optimising the diagnosis and referral of achondroplasia in Europe: European Achondroplasia Forum best practice recommendations

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The EAF reviewed the timepoint of diagnosis and referral of achondroplasia in six European centres. There is often a delay in referral to a specialist centre, so the EAF developed some best practice recommendations to ensure accurate diagnosis and timely referral to a clinician or multidisciplinary specialist in achondroplasia to enable optimum management.

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