4 resources for families living with achondroplasia

Achondroplasia is a genetic disorder that impairs the growth and development of cartilage and bones, resulting in short stature, and often resulting in shorter limbs, a larger head, and prominent brow. Beyond the ways that achondroplasia affects a person’s height and appearance, the condition also puts a person at risk for numerous health complications. Treatment is essential to identifying and addressing healthcare needs.

Though achondroplasia is a lifelong condition, it begins before a person is born. In the early years of a person’s life, parents and caregivers will take on many new responsibilities related to the management and treatment of achondroplasia—working with a healthcare team, understanding the condition and the treatments available, and guiding a child through school and extracurricular activities.

While achondroplasia is a different experience for every family, one thing that everyone impacted by this condition has in common is a need for information and support.

With that in mind, the links below will take you to organizations that provide important background information on achondroplasia, as well as resources to help people with the emotional, financial, and practical challenges of living with the condition.

Beyond Achondroplasia

This site is one of the most comprehensive resources for learning more about achondroplasia, with an extensive library of information on every aspect of care, pages that look at the challenges of living with achondroplasia at different ages, and information on adaptations for home, school, work, clothing, vehicles, and other aspects of everyday life.

Growing Stronger

Growing Stronger provides resources for parents and caregivers affected by achondroplasia. The organization also supports medical research related to achondroplasia. The pages of the site that cover the basics of the condition are a great starting point—and can be helpful for anyone who finds themselves needing to explain the condition to others. There is also ACHONversations, a series of videos featuring experts, physicians, family, and medical researchers working on therapies to treat achondroplasia.

Magic Foundation

The Magic Foundation is a non-profit organization dedicated to helping people with growth-related disorders, with a focus on connecting people with support networks, online communities, and expert information. The site does not specifically cover achondroplasia, but it’s being included here for its pages covering insurance appeals. Navigating insurance coverage can be confusing, and this page is worth reading (and bookmarking) if you are a parent of a child with any health condition that requires ongoing care.

NORD RareCare

Part of the National Organization for Rare Disorders (NORD), the RareCare Patient Assistance Programs support individuals and families living with rare disorders. The program provides assistance with travel for treatment, obtaining medications, financial assistance with insurance premiums and copays, patient education, and referrals to other patient assistance programs. More information, including information about eligibility and the application process, can be found on the website.

The NORD website also has pages dedicated to achondroplasia. These are also worth a look, especially for anyone seeking information on causes, symptoms, diagnosis, and standard therapies. Updated regularly, you’ll find information on newer therapies that are available, as well as treatments that are under development.