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With diverse perspectives, unique experiences, and firsthand knowledge, the achondroplasia community can help provide support and connection.
One aspect of her life just happens to be that she was born with achondroplasia. But this doesn’t define who she is and will be.
Kelsey, Mother of a child with achondroplasia*
See how others are showing the world what it means to live life with achondroplasia.
When Diego was born, Sela felt scared and had a lot of questions. With the help of an experienced care team and supportive community, she was able to feel more confident that she was providing her son with the best care.
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.
Jackson’s a snowboarder, swimmer, and advocate. His mom, a pediatric occupational therapist, was able to use her expertise to guide her search for answers. By following Jackson’s lead, his family helps him flex his muscles and crush misconceptions about what a child with achondroplasia can really do.
Angel is a typical teenager who is learning to embrace his independence and chart his own path forward with the support of his parents.
Attend an achondroplasia event and hear from experts within the community. From family-friendly outings with your local achondroplasia community to expert-led educational webinars, there are a variety of ways to connect and learn from others who understand your experience.
The following advocacy groups are listed to provide support for you and your family along the achondroplasia journey. BioMarin is not responsible for the content and conduct of these organizations.
From online communities to local groups and national organizations, there’s an expansive network of support within the achondroplasia community.
Little People of America (LPA) has been a source of connection, support, advocacy, and information for people and families living with various kinds of dwarfism. It has been instrumental in elevating and celebrating little people everywhere, and advocating for disability rights and inclusion.
Growing Stronger strives to improve the quality of medical care for little people through supporting research. It provides information and resources that may help guide some of the conversations with your child’s healthcare team.
The Chandler Project was created to provide a safe space for those affected by achondroplasia and other skeletal dysplasias. It’s a place to connect with families like yours to learn more about current and ongoing research for managing achondroplasia and other skeletal dysplasias.
The Little Legs Big Heart Foundation is on a mission to empower and uplift individuals living with skeletal dysplasia and their families, redefining inclusivity and acceptance for the skeletal dysplasia community and encouraging them to resiliently live life beyond height.
The Human Growth Foundation provides research, education, patient support, and advocacy to help improve the quality of life for those affected by rare growth, bone, and endocrine conditions.
Because achondroplasia is rare, it may be difficult to find doctors with the experience you need. Feel confident you’re finding specialized care for your child.
Locate healthcare providers in your area who have chosen to be part of the Achondroplasia Doctor Finder.
Gain access to information about achondroplasia, including educational resources and upcoming events in your area. All sent directly to your inbox.
*Names have been anonymized.
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