Empowering families, advancing research.
We’re working to give those living with acrodysostosis and their families a brighter future.
What is Acrodysostosis?
Acrodysostosis (pronounced Acro-dis-o-sto-sis) is a rare genetic disease characterised by skeletal malformations, growth delays, short stature and distinctive facial features.
We have a database of over 100 people – mostly children and young people – diagnosed with acrodysostosis worldwide.
Patient registry coming soon
A new patient registry for acrodysostosis will be launching soon from CoRDS (Coordination of Rare Diseases at Sanford) - check back here for updates.
How we help
Supportive community
We are made up of the people who are living with acrodysostosis, their parents, family members, and friends – sharing information and support with one another.
Leading research
We collaborate with medical experts to share important information and data about this incredibly rare disease for research projects and publications.
Shaping the future
Together, we are working to better understand and treat acrodysostosisin the future.
