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.
Fauroux et al. present five guiding principles for the management of sleep-disordered breathing in people with achondroplasia. These guiding principles were developed to address the knowledge gaps in this area and focus on lifelong assessment and proactive management to support optimal screening and care.
Guillen-Navarro et al. explored awareness of and alignment with international recommendations for achondroplasia, and how closely recommendations are followed in clinical practice. Results from two surveys showed high awareness among clinicians, but lower awareness among parents of children with achondroplasia. This paper highlights opportunities to improve consistency in care and raise awareness across the achondroplasia community.
