This website is intended for residents of the U.S. interested in achondroplasia
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The Inside Story

Uncover a community of unique individuals, dedicated caregivers, and medical professionals sharing their insider perspectives on raising a child with achondroplasia.

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Her name is Sarah, not achondroplasia…achondroplasia just happens to be her condition.

Jennifer, Mother of Sarah, 5 years old*
Baby lying down

Navigating a diagnosis

The first 2 years of life are important for your child’s growth. Take the next steps toward finding specialized care with confidence.

SEE WHAT TO EXPECT

Understanding achondroplasia

Inhibited bone growth can affect physical development and overall health. Dive deeper into the cause and impact of achondroplasia.

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Children with achondroplasia

Learning from community

Meet members of your local achondroplasia community or hear from experienced healthcare professionals in person or virtually.

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HEARING REAL STORIES FROM REAL FAMILIES

Raegan has a larger-than-life personality and loves to laugh. Her mother, Raechel, is a planner who always has an eye on the big picture. See how their community helped them find belonging and understanding.

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CARING FOR YOURSELF

Self care is an essential part of providing your child with the best support possible. Learn how you can start taking simple steps to make your health a priority as well.

Explore tips

Explore a treatment option

Discover a treatment option for infants and children with achondroplasia.

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Join the inside story

Gain access to information about achondroplasia, including educational resources and upcoming events in your area. All sent directly to your inbox.

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*Names have been anonymized.

References:

  • Adedeji A, Witt S, Innig F, et al. Coping and quality of life of parents of children with achondroplasia-a narrative review. Front Med (Lausanne). 2025;12:1500389.
  • Constantinides C, Landis SH, Jarrett J, et al. Quality of life, physical functioning, and psychosocial function among patients with achondroplasia: a targeted literature review. Disabil Rehabil. 2022;44(21):6166-6178.
  • Hoover-Fong J, Cheung MS, Fano V, et al. Lifetime impact of achondroplasia: current evidence and perspectives on the natural history. Bone. 2021;146:115872.
  • Hoover-Fong JE, Schulze KJ, McGready J, et al. Age-appropriate body mass index in children with achondroplasia: interpretation in relation to indexes of height. Am J Clin Nutr. 2008;88(2):364-371.
  • Hoover-Fong J, Scott CI, Jones MC; Committee on Genetics. Health supervision for people with achondroplasia. Pediatrics. 2020;145(6):e20201010.
  • Horton WA, Hall JG, Hecht JT. Achondroplasia. Lancet. 2007;370(9582):162-172.
  • Merker A, Neumeyer L, Hertel NT, et al. Growth in achondroplasia: development of height, weight, head circumference, and body mass index in a European cohort. Am J Med Genet A. 2018;176(8):1723-1734.
  • 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.
  • 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