Description
The management of achondroplasia is multifaceted and currently there is an unmet need regarding delivery of care. To address this the European Achondroplasia Forum (EAF), a network of senior clinicians and orthopaedic surgeons from Europe and the Middle East, have developed six guiding principles which cover management over the lifetime of a person with achondroplasia.
The principles centre on the lifelong management of achondroplasia to anticipate and manage complications, support independence, and improve quality of life. There is focus on timely referral to a physician experienced in the management of achondroplasia on suspicion of the condition, shared decision making, the goals of management, access to adaptive measures to enable those with achondroplasia to access their environment, and the importance of ongoing monitoring throughout adolescence and adulthood.
The guiding principles of management for achondroplasia provide all healthcare professionals, patient advocacy groups and policy makers involved in the management of achondroplasia with overarching considerations when developing health systems to support the management of achondroplasia.
EU-ACH-00191 09/21
References:
Valerie Cormier‑Daire, Moeenaldeen AlSayed, Tawfeg Ben‑Omran, Sérgio Bernardo de Sousa, Silvio Boero, Svein O. Fredwall, Encarna Guillen‑Navarro, Melita Irving, Christian Lampe, Mohamad Maghnie, Geert Mortier, Zagorka Peijin and Klaus Mohnike Orphanet J Rare Dis 2021;16:333.