What Is Achondroplasia? Resources + Tools
What Is Achondroplasia? Resources + Tools

Resources + Tools

Resources + Tools

Finding connection and support

Connecting with other people and families living with achondroplasia can be an important source of support. Advocacy organizations may provide information, helpful resources, and a welcoming sense of community. Some of these groups are listed below, and your child’s doctor may also be able to suggest additional connections.

National advocacy organizations

To learn about advocacy organizations outside of the United States, visit:

Personal stories

Hear from individuals and families as they share their experiences and perspectives on living with achondroplasia.

Finding Community and Strength:
Sean's Achondroplasia Journey

Turning Hurdles Into Happiness:
Yukiko’s Achondroplasia Journey

A Teenager's Journey With Achondroplasia:
Anais’s Story

HEAR FROM THE COMMUNITY

“What I want to convey to society is that rare conditions exist, and there are many people in the world who need help. I genuinely wish that the world would be kinder. I hope people have a level of knowledge that allows them to understand the condition when they see a child that is smaller or looks different.”

- Mother of a child living with achondroplasia

“Typically, with achondroplasia, people focus on height, but there are other important aspects of the condition that impact quality of life.”

- Father of a teenager living with achondroplasia

“I would tell myself back then [at time of diagnosis], just take a deep breath and let go of the fear a little bit. Fear is normal. Once you are over that fear, you kind of just dive in. You dive into the information, and you educate yourself and learn everything you can learn about achondroplasia and really try to be your kid’s biggest advocate.”

- Mother of a teenager living with achondroplasia

“I see in my future pretty much what anyone else would: graduating school, graduating college, going on to a job I like, starting a family.”

- Teenager living with achondroplasia

“Really, we are just like everyone else. We may look different, but we like being treated like everyone else.”

- Teenager living with achondroplasia

“The greatest joy as a parent is seeing my son be energetic and cheerful. I hope that my son will continue to look forward proudly, hold his head high, and live confidently and cheerfully.”

- Mother of a child living with achondroplasia

“My joy is seeing my child’s daily progress. There were many things she couldn’t do like other children. She is gradually becoming capable of those things, little by little. I realized that it’s okay to grow slowly.”

- Mother of a child living with achondroplasia

“My friends would describe me as someone with a big personality, very outgoing, and someone that always is smiling. I’m a people person, and I love making people happy.”

- Young adult living with achondroplasia

“Having achondroplasia, you are going to come across challenges consistently. The way you are going to deal with them is really going to impact your life. Yes, I have challenges; obstacles get thrown at me all the time, but it’s the way of going about it and realizing there is so much more to life than having achondroplasia.”

- Young adult living with achondroplasia

“What we have seen is that she has done a great job of adapting herself, getting creative, doing things a little bit differently, but she always finds a way to be successful.”

- Father of a teenager living with achondroplasia

“We have relied heavily on the community. We are quite appreciative of the community and the resources that are available to help parents, siblings and individuals with achondroplasia. The diversity within this community has been quite enriching on many levels.”

- Father of a teenager living with achondroplasia

“Our daughter is a person. She has feelings. Yes, she may be physically different than other children or other people, but I think that it is important to be aware of those differences without necessarily calling attention to them.”

- Father of a teenager living with achondroplasia

“I was four years old when my younger brother was born. I was young and didn’t understand what achondroplasia was. I don’t care if my brother is tall or short. I was simply happy to have a younger brother.”

- Sibling of a person living with achondroplasia

“We were always outside, we always were being competitive, playing sports, just being kids.”

- Young adult living with achondroplasia