{"id":21,"date":"2022-11-03T18:34:48","date_gmt":"2022-11-03T18:34:48","guid":{"rendered":"https:\/\/hcp.biomarin.com\/en-us\/achondroplasia\/?page_id=21"},"modified":"2025-08-19T14:21:17","modified_gmt":"2025-08-19T14:21:17","slug":"management","status":"publish","type":"page","link":"https:\/\/hcp.biomarin.com\/en-us\/achondroplasia\/management\/","title":{"rendered":"Management"},"content":{"rendered":"
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Achondroplasia support starts with you\n<\/h1>\n\t\t\t\t\t\t\t\t\t\t\t\t

Parents, caregivers, and individuals with achondroplasia may need a strong medical community from day one1<\/sup><\/p>\n\t\t\t\t\t\t\t\t\n

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Explore a treatment for achondroplasia2<\/sup><\/p>\n <\/div>\n\t\t\t\t\t\t\t\t

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Learn more<\/a><\/p>\n <\/div>\n \t\t\t<\/div>\n\t\t<\/div>\n\t<\/div>\n<\/div>\n\n

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Achondroplasia results in multisystemic complications<\/h2>\n

Management requires a multidisciplinary team familiar with best practices. To ensure care coordination, it\u2019s important for parents, caregivers, and patients to have a reliable expert at the center of their care.1,3-8<\/sup><\/p>\n <\/div>\n\n

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Primary care providers can help to coordinate a multidisciplinary approach to care\n<\/h2>\n\t\t\t\t\t\t \t\t\t\t\t\t \t\t\t\t\t\t

Because achondroplasia leads to foreseeable complications, setting the proper expectations for long-term management\u2014including assembling an engaged care network\u2014is essential. A multidisciplinary network of specialists can provide individualized recommendations to help mitigate the multisystemic complications of achondroplasia.1<\/sup><\/p>\n\t\t\t\t\t\t \t\t\t\t\t <\/div>\n\t\t\t\t\t

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Download your Care Team Worksheet <\/a><\/p>\n <\/div>\n\t\t\t\t\t <\/div>\n\t\t\t\t<\/div>\n\t\t\t<\/div>\n\t\t<\/div>\n\t<\/div>\n<\/div>\n\n

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A resource for patients and their caregivers<\/h3>\n

InsideACH.com brings together information and insights from within the achondroplasia community to help families thrive at every step. A network of resilient individuals, dedicated caregivers, and experienced medical professionals is here to offer guidance, support, and expertise.<\/p>\n

Visit insideACH.com<\/a><\/p>\n <\/div>\n \t\t<\/div>\n\t<\/div>\n<\/div>\n\n

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Patient advocacy groups<\/h3>\n

Support groups can provide a sense of community and a support network. <\/strong>We recommend referring your patients with achondroplasia and their caregivers to these associations for helpful information, resources, and engagement with the community.<\/p>\n

The MAGIC Foundation<\/a><\/p>\n

The Chandler Project <\/a><\/p>\n

Growing Stronger <\/a><\/p>\n

Human Growth Foundation<\/a><\/p>\n <\/div>\n \n

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Achondroplasia complications\n<\/h4>\n \n

Common complications can be expected across an individual’s lifetime<\/p>\n \n <\/div>\n

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Learn more about achondroplasia complications<\/a><\/p>\n <\/div>\n<\/div>\n\n

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Resource library\n<\/h4>\n \n

Everything you need to deepen your achondroplasia knowledge<\/p>\n \n <\/div>\n

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Access achondroplasia fact sheets and resources<\/a><\/p>\n <\/div>\n<\/div>\n\t\t\t<\/div>\n\t\t<\/div>\n\t<\/div>\n<\/div>\n\n

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Test your knowledge\n<\/h2>\n\t\t\t\t\t\n\t\t\t\t\t\t\t\t\t\t

Because it is a risk factor for sudden death, cervicomedullary compression should be monitored closely in which age groups?<\/p>\n\t\t\t\t\t\n

\n \n Child (5-14) and Adult (18+)\n <\/a>\n \n Infant (birth-2) and Toddler (3-4)\n <\/a>\n \n Child (5-14) and Teenager (14-18)\n <\/a>\n \n Teenager (14-18) and Adult (18+)\n <\/a>\n <\/div>\n\t\t\t\t\t\n
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Submit<\/a><\/p>\n <\/div>\n\t\t\t\t\t\t\t\t\t<\/div>\n\n\t\t\t\t

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Correct!\n<\/h2>\n \n

That\u2019s not it \u2013 The correct answer is %answer%\n<\/h2>\n \n

Infants and toddlers are at an increased risk of sudden death<\/b> due to cervicomedullary compression at the foramen magnum and children with achondroplasia are faced with musculoskeletal, otolaryngologic, neurologic, and spinal complications\u2014a number of which may require surgery.1-3<\/sup><\/p>\n <\/div>\n

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\n References<\/a>\n <\/p>\n

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Close references<\/a><\/p>\n

References:\n<\/h2>\n
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  1. Pauli RM. Achondroplasia: a comprehensive clinical review.\u202fOrphanet J Rare Dis. 2019;14(1):1. Published 2019 Jan 3. doi:10.1186\/s13023-018-0972-6.\n<\/span><\/li>\n
  2. Wynn J, King TM, Gambello MJ, Waller DK, Hecht JT. Mortality in achondroplasia study: a 42-year follow-up.\u202fAm J Med Genet A. 2007;143A(21):2502-2511. doi:10.1002\/ajmg.a.31919.\n<\/span><\/li>\n
  3. Ednick M, Tinkle BT, Phromchairak J, Egelhoff J, Amin R, Simakajornboon N. Sleep-related respiratory abnormalities and arousal pattern in achondroplasia during early infancy.\u202fJ Pediatr. 2009;155(4):510-515. doi:10.1016\/j.jpeds.2009.04.031.\n<\/span><\/li>\n <\/ol>\n <\/div>\n <\/div>\n\t\t\t\t\t\t\t\t\t<\/div>\n\t\t\t<\/div>\n <\/div>\n <\/div>\n<\/div>\n\n
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    References:\n<\/h4>\n\t\t\t\t\t\t
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    1. Hoover-Fong J, Scott CI, Jones MC; Committee on Genetics. Health supervision for people with achondroplasia. Pediatrics<\/em>. 2020;145(6):e20201010.\n<\/span><\/li>\n
    2. Savarirayan R, Hoover-Fong J, Ozono K, et al. International consensus guidelines on the implementation and monitoring of vosoritide therapy in individuals with achondroplasia. Nat Rev Endocrinol<\/em>. 2025;21(5):314-324.\n<\/span><\/li>\n
    3. Ireland PJ, Pacey V, Zankl A, Edwards P, Johnston LM, Savarirayan R. Optimal management of complications associated with achondroplasia. Appl Clin Genet<\/em>em. 2014;7:117-125. Published online June 24, 2014.\n<\/span><\/li>\n
    4. Hunter AG, Bankier A, Rogers JG, et al. Medical complications of achondroplasia: a multicentre patient review. J Med Genet<\/em>. 1998;35(9):705-712.\n<\/span><\/li>\n
    5. Wright MJ, Irving MD. Clinical management of achondroplasia. Arch Dis Child<\/em>. 2012;97(2):129-134.\n<\/span><\/li>\n
    6. Unger S, Bonaf\u00e9 L, Gouze E. Current care and investigational therapies in achondroplasia. Curr Osteoporos Rep<\/em>. 2017;15(2):53-60.\n<\/span><\/li>\n
    7. Savarirayan R, Ireland P, Irving M, et al. International Consensus Statement on the diagnosis, multidisciplinary management and lifelong care of individuals with achondroplasia. Nat Rev Endocrinol<\/em>. 2022;18(3):173-189.\n<\/span><\/li>\n
    8. Pauli RM. Achondroplasia: a comprehensive clinical review. Orphanet J Rare Dis<\/em>. 2019;14(1):1.\n<\/span><\/li>\n <\/ol>\n\t\t\t\t\t<\/div>\n\t<\/div>\n<\/div>\n\n
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