Resources

The IAF has developed several resources to support multidisciplinary collaboration, enhance patient engagement, and strengthen clinical care for individuals with achondroplasia and related conditions. Informed by expert consensus and real-world clinical experience, these tools are designed to guide care, improve communication, and address the evolving needs of both healthcare providers and patients.

Posters

European Achondroplasia Forum: Practical Considerations for Following Adults with Achondroplasia – A Patient-held Checklist

This poster presents data from the EAF workshop held in April 2024 and aimed to establish whether current outcome measures are still fit for purpose in the current era of achondroplasia therapy. It is noted that current measures either do not exist or do not capture the necessary data, and agreement on a standardised core set of outcomes and, a simplified, time efficient way of collecting quality of life data is needed.

European Achondroplasia Forum: Assessing Outcomes in a New Era of Achondroplasia Treatment

Clincial support

Adults with Achondroplasia Consultation Guide

Achondroplasia management: Guiding Principles of Care

Workshop minutes

Achondroplasia Management: Guiding Principles of Care Workshop

Orthopaedic interventions in achondroplasia: Identifying optimal care for improved outcomes

Assessing Outcomes in a New Era of Achondroplasia Treatment

Understanding Sleep Studies in Achondroplasia: Which? When? Why?

Clinical Management Challenges in Infants and Young Children with Achondroplasia

Detection and Management of Foramen Magnum Stenosis in Achondroplasia

Standard operating procedures

EAF Standard Operating Procedure for Developing Guiding Principles/Recommendations

Useful Links