Overview

Welcome to Acrodysostosis Support and Research! We are a group of people from across the world brought together by the shared goal of learning more about the rare genetic disease, Acrodysostosis. We are made up of the people who are living with the disease, their parents, family members, and friends. The group also includes scientists and doctors who are interested in researching the disease to learn more about it. There are thought to be around 70 people - most often children and young people - diagnosed with acrodysostosis worldwide. For many of these people and their families, this diagnosis will be made after months or years of uncertainty about the condition. Furthermore, there is very little that doctors can do to help past diagnosis, outside of treating each symptom with traditional therapies. Because acrodysostosis is so rare, the medical world simply does not have enough data to understand the disease properly yet. We want to change that.