About the Association

About the Melorheostosis Associaton

The Melorheostosis Association is a 501(c)(3) non-profit organization dedicated to finding the cause, treatments and cure for melorheostosis. Our focus is on promoting greater awareness and understanding of this progressive disease and its manifestations through education, research, communication and advocacy efforts on behalf of those affected by it as well as those dedicated to alleviating it. 

Starting in 2001, the Melorheostosis Association has established the world’s largest database of melorheostosis patients, created an active community of patient support and communication, hosted 14 international conferences, established a world-renowned Medical Advisory Panel, funded research,established a tissue repository, coordinated with the Mayo Clinic, promoted awareness, and participated in critical melorheostosis research, including a long-term study of melorheostosis at the National Institutes of Health.  Our all-volunteer Board of Directors is, and always has been, comprised of patients and parents of melorheostosis patients.

The Association’s efforts, participation and collaboration have assisted in the identification of 3 causative genes for melorheostosis, MAP2K1, SMAD3 and KRAS. 

Melorheostosis patients, and their families, are strong, determined and highly motivated.  Our fondest hope is that the continued efforts of the Association will lead to treatments and, ultimately, a cure for melorheostosis.  We will not rest until it does.