The EAF is a network of
The EAF is a network of specialists in achondroplasia management representative of the achondroplasia clinical community. The aim of the 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
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Two New Manuscripts Published!
Optimising the diagnosis and referral of achondroplasia in Europe: European Achondroplasia Forum best practice recommendations.
Ensuring timely diagnosis and referral of achondroplasia patients is the essential first step in optimising care. The EAF undertook an audit of what is happening today and have developed recommendations on best practice. You can read these in our latest publication published in Orphanet Journal of Rare Diseases by clicking the link below. You can use these recommendations to help shape best practice for your patients.
If you would like to join our discussions, please register on the site to keep informed of our upcoming meetings.
Optimising Care and Follow-up of Adults with Achondroplasia
The EAF guiding principles of management advocate for management of achondroplasia by a multidisciplinary team through the life stages, however little is known about the care that adults with achondroplasia receive, or the process of transition from paediatric to adult services. Read our latest publication to improve your understanding of the key barriers to optimal care in this age group, and use the results of our exploratory surveys to inform your practice. If you would like to be part of future EAF discussions, please register to keep informed of our upcoming meetings
Developments in Achondroplasia
Developments in Achondroplasia are workshops that focus on particular areas of achondroplasia management. Experts are invited to lead the discussions and share their knowledge and experience, and the sessions are open for all to attend. Previous workshops have included analysis of survey data, and our findings have been developed into manuscripts for publication. We’re delighted to be able to share our discussions with you.
See below for our most recent workshop.
Upcoming: Clinical Management Challenges in Infants and Young Children with Achondroplasia
Register now for our next workshop to be held on Thursday 27th October 2022, 16:30 CET
Management of infants and young children with achondroplasia is well covered in the literature, but what are the challenges faced in clinical practice, and how closely does practice align with recommendations? Join our international faculty of clinicians and parents of children with achondroplasia for our next Developments in Achondroplasia workshop where we will discuss this and collaborate to propose strategies to overcome barriers to best practice. Be part of the discussion; register now!
Detection and Management of Foramen Magnum Stenosis in Achondroplasia
This interactive and well-attended Developments in Achondroplasia workshop saw consensus reached on six guiding principles for the detection and management of foramen magnum stenosis. The recording of our discussions and the minutes from the meeting are now available for you to view.
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The EAF is supported by educational grants from: