When families and researchers get together wonderful things can happen
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.
Born from a Facebook group established in 2015, our small but determined community began comprised of parents and loved ones of children living with acrodysostosis. Faced with a shared lack of any specific medical treatment, we shared information and advice with one another.
Eventually we connected with medical experts interested in rare genetic disorders like acrodysostosis. This gave members of our community the chance to champion the importance of more research into acrodysostosis to the medical world, and to forge invaluable partnerships with medical experts.
We understood then for the first time that not only could healthcare professionals help us, we could help them.
Today, we are a passionate and determined group from all over the world made up of people living with acrodysostosis, their parents and loved ones, and various medical and genetic experts.
We’ve joined forces to shed some light on this incredibly rare disease by providing our experts with important information about acrodysostosis and the people living with it.
Together, we hope to change the future landscape for those living with the disease.
But we need your help to do it.
Our medical experts report that the data collected through patient questionnaires will be used for research and potential clinical trials in years to come.
Together, we can work to better understand and, perhaps, effectively treat acrodysostosis in the future.
And we need your help to make that a reality.