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Achondroplasia results in multisystemic complications that require a multidisciplinary team familiar with best practices in its management. To ensure care coordination, it’s important for parents, caregivers, and patients to have a reliable expert at the center of their care.1-5
Because achondroplasia leads to foreseeable complications, setting the proper expectations for long-term management—including assembling an engaged care network—is essential. A multidisciplinary network of specialists can provide individualized recommendations to help mitigate the multisystemic complications of achondroplasia.1
Achondroplasia.com is a patient-facing website designed to help patients and their caregivers learn about achondroplasia, its management, and the resources available to them, as well as to see how different families support, adapt, and embrace a life that’s uniquely their own.
We recommend referring your patients with achondroplasia and their caregivers to these associations for helpful information, resources, and engagement with the community.
References: 1. Hoover-Fong J, Scott CI, Jones MC; Committee on Genetics. Health supervision for people with achondroplasia. Pediatrics. 2020;145(6):e20201010. 2. Ireland PJ, Pacey V, Zankl A, Edwards P, Johnston LM, Savarirayan R. Optimal management of complications associated with achondroplasia. Appl Clin Genet. 2014;7:117-125. Published online June 24, 2014. 3. Hunter AG, Bankier A, Rogers JG, Sillence D, Scott CI Jr. Medical complications of achondroplasia: a multicentre patient review. J Med Genet. 1998;35(9):705-712. 4. Wright MJ, Irving MD. Clinical management of achondroplasia. Arch Dis Child. 2012;97(2):129-134. 5. Unger S, Bonafé L, Gouze E. Current care and investigational therapies in achondroplasia. Curr Osteoporos Rep. 2017;15(2):53-60.