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Achondroplasia support starts with you

Parents, caregivers, and individuals with achondroplasia may need a strong medical community from day one1

Explore a treatment for achondroplasia2

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Achondroplasia results in multisystemic complications

Management requires a multidisciplinary team familiar with best practices. To ensure care coordination, it’s important for parents, caregivers, and patients to have a reliable expert at the center of their care.1,3-8

A radial chart showing a figure of a person in the center surrounded by a ring of medical specialties. The specialties are labeled with circles connected by lines to the central ring. The top section, highlighted in yellow, includes "Pediatrician/Family Medicine," "Medical Geneticist/Genetic Counselor," and "Pediatric Endocrinologist." The right side of the chart, in light blue, shows "Neurologist/Neurosurgeon," "Pulmonologist/Sleep Specialist," and "Orthopedic Surgeon." The bottom section, in a darker shade of blue, lists "Pain Specialist," "Psychologist/Psychiatrist," and "Nutritionist/Dietitian." The left side, in a light blue shade, includes "Physical/Occupational Therapist," "Otolaryngologist/Audiologist/Speech Therapist," and "Dentist/Orthodontist."

Primary care providers can help to coordinate a multidisciplinary approach to care

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

Download your Care Team Worksheet

A resource for patients and their caregivers

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.

Visit insideACH.com

Patient advocacy groups

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

The MAGIC Foundation

The Chandler Project

Growing Stronger

Human Growth Foundation

A young girl with Achondroplasia with her mother laying on a couch

Achondroplasia complications

Common complications can be expected across an individual’s lifetime

Learn more about achondroplasia complications

Resource library

Everything you need to deepen your achondroplasia knowledge

Access achondroplasia fact sheets and resources

Test your knowledge

Because it is a risk factor for sudden death, cervicomedullary compression should be monitored closely in which age groups?

Child (5-14) and Adult (18+) Infant (birth-2) and Toddler (3-4) Child (5-14) and Teenager (14-18) Teenager (14-18) and Adult (18+)

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References:

  1. Hoover-Fong J, Scott CI, Jones MC; Committee on Genetics. Health supervision for people with achondroplasia. Pediatrics. 2020;145(6):e20201010.
  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. 2025;21(5):314-324.
  3. Ireland PJ, Pacey V, Zankl A, Edwards P, Johnston LM, Savarirayan R. Optimal management of complications associated with achondroplasia. Appl Clin Genetem. 2014;7:117-125. Published online June 24, 2014.
  4. Hunter AG, Bankier A, Rogers JG, et al. Medical complications of achondroplasia: a multicentre patient review. J Med Genet. 1998;35(9):705-712.
  5. Wright MJ, Irving MD. Clinical management of achondroplasia. Arch Dis Child. 2012;97(2):129-134.
  6. Unger S, Bonafé L, Gouze E. Current care and investigational therapies in achondroplasia. Curr Osteoporos Rep. 2017;15(2):53-60.
  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. 2022;18(3):173-189.
  8. Pauli RM. Achondroplasia: a comprehensive clinical review. Orphanet J Rare Dis. 2019;14(1):1.

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