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.
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.
The EAF’s first publication focused on developing guiding principles of management for achondroplasia. Having assessed the unmet needs associated with achondroplasia and the many differences in how the condition is managed across Europe, a consensus was reached on six overarching considerations for all healthcare professionals, patient advocacy groups and policy makers involved in the management of achondroplasia.
