About Melo
Melo • rhe • ostosis
What is Melo?
Melorheostosis is a rare and progressive bone disorder characterized by significant thickening of the cortical bone. It affects both bone and soft tissue growth and development. On x-rays, the appearance of melorheostosis has been likened to flowing, melted candle wax.
Our Mission
The Melorheostosis Association is a 501(c)(3) non-profit organization dedicated to finding the causes, treatments, and cures for melorheostosis. We focus 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.
About the Board
The Association is registered as a 501(c)(3) and is run by an all-volunteer board including a president, secretary, treasurer, and chairperson/founder. Board members plan conferences and events, foster communication between researchers and the patient community, and oversee fundraising efforts to support the patient community and ongoing research. A medical panel is in place to support the Association with best practices, research efforts, and patient advocacy in the rare disease space.
Melo Through the Years
Learn more about the major milestones throughout the history of Melorheostosis, the Association, and patient research advancements.
1922
Melorheostosis first identified by Leri and Joanny in France.
2001
Melorheostosis Association established by patients and parents looking to support the advancement of research and patient connection.
2003
First Melorheostosis Association conference held—kicking off biennial conferences for patients, supporters, researchers, and medical professionals.
2015
National Institutes of Health launches a natural history study and begins recruiting patients.
2018
Somatic mutations in MAP2K1 identified as one cause of melorheostosis—other genes include KRAS, LEMD3, and SMAD3.
20??
Our next milestone: patients gain access to treatments to stop the progression of Melorheostosis.
Who We Can Help
The Melorheostosis Association was formed by patients and supporters to bring the patient community together from across the world while focusing on research and advocacy to identify causes and treatments for those affected by melorheostosis.
Upcoming Conference
Stay tuned for more details on our 15th International Conference in 2027. We look forward to bringing patients and supporters together with researchers and doctors as we learn from the latest research and champion the work towards treatments. Sign up to stay connected and receive conference announcements.
