Optimising care and follow-up of adults with achondroplasia.
Svein Otto FredwallYana AllumMoeenaldeen AlSayedInês AlvesTawfeg Ben-OmranSilvio BoeroValerie Cormier-DaireEncarna Guillen-NavarroMelita IrvingChristian LampeMohamad MaghnieKlaus MohnikeGeert MortierSérgio B SousaMichael WrightPublished in: Orphanet journal of rare diseases (2022)
This study indicates that the care and follow up of adults with achondroplasia is challenging. Individuals are often lost to, or decline, follow up as they leave paediatric care, and it is largely unknown how, where, and why adults with achondroplasia access care later in life. Lifelong, multidisciplinary specialist care led by an identified physician should be accessible to all individuals with achondroplasia. It is important to ensure barriers to optimal care are addressed to enable access to appropriate care for all individuals with achondroplasia.