We are pleased to be working with Acrodysostosis Support & Research and to be supporting their fundraising efforts.

350 million people globally live with a rare disease and more than 75% of them occur in childhood. For many of these children, a life of constant discomfort and pain, and the prospect of multiple operations is their everyday normal.

This is the case for children with a rare genetic bone disease called Acrodysostosis, incredibly difficult to pronounce but a nightmare to live with (pronounced Acro-dis-o-sto-sis)! It causes developmental problems, intellectual disability and physical malformations in its sufferers, which in turn gives rise to chronic issues and progressively more debilitating mobility as they grow.

This is what we do know, but there is so much more we don’t. Today, after being given this  devastating diagnosis, patients and their families are told there is no cure or even treatment available.  This places incredible stresses and uncertainty on sufferers and their families.

Acrodysostosis Support & Research Charity is the only charity in the World providing dedicated support to families affected by Acrodysostosis. Since we were established in 2019, the charity has been instrumental in leading the research into possible treatments for this cruel disease.

Collaborating directly with HCPs and families, we ensure that our community is always at the forefront of the discussion as we work towards our goal of finding treatments for Acrodysostosis.

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.