Together, we fuel hope for patients
The Melorheostosis Association is a 501(c)(3) nonprofit organization dedicated to finding the cause, treatment, 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.
Learn more about the long-term study on melorheostosis at the National Institutes of Health (NIH) in Bethesda, Maryland, United States. Enrollment is open now for adult patients!
Our Impact
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international conferences held
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causative genes found through research
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patients connected with hope for the future
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years supporting an NIH long-term natural history study
Patient Support
We know life with a rare disease comes with challenges. We’re here to provide trusted resources, community connection, guidance for managing your care, and research opportunities.
Medical Professionals
Supporting patients with their rare disease journey is critical. We are here to provide the most recent research, resources, and connections to ongoing research to better support your patients.
Research Partnerships
Rare disease investigation relies on collaboration and engagement with patient communities and the availability of research-quality data. We want to continue accelerating scientific breakthroughs with a focus on treatments that slow or stop the progression of melorheostosis for our patients. We are on a mission to transform the lives of those living with melorheostosis. Can you help?
Participate in Research
Adult patients from all over the world are encouraged to participate in the National Institutes of Health long-term natural history study.
Attend a Conference
Every other year, the Association brings patients, supporters, researchers, and doctors together for a conference to share all the latest research and progress toward treatments.
Connect with the Community
Join our online patient and supporter community on Facebook – share your story and learn how others are managing their care.
Add Yourself to Our Map
Patients are encouraged to share their location on our patient map to help us highlight the vastness of the melo community around the world.
Get Involved
Beyond managing your care and life with melorheostosis, we encourage all patients and supporters to participate in research, attend a conference, or connect with others in our online community. It is a great way to get involved as we work towards a treatment or cure, together.