Patients
We’re here to provide trusted resources, community connection, guidance for managing your care, and research opportunities.
Newly Diagnosed?
Here’s What to Expect.
A melorheostosis diagnosis can feel overwhelming, but you are not alone. Often called “dripping candle wax” disease, this rare bone disorder is complex. While there is no cure, expert care, symptom management, and emerging research can help you protect mobility and improve quality of life. Learn more about building a medical team, managing your care, and exploring therapies that support daily function. We’re here to share trusted resources, research updates, and a global community dedicated to helping you move forward with confidence and hope.
Managing Melorheostosis
No matter where you’re at in your journey with melorheostosis, we’re here to support patients of all ages with managing their care and connecting to the community.
Ongoing Research
For over 10 years, the National Institutes of Health in Bethesda, Maryland, USA has been supporting a natural history study of melorheostosis. The study, and participation from melo patients all over the world, have helped to identify two genes that cause variations of melorheostosis. Researchers are continuing to see patients, complete genetic testing, and hypothesize around potential treatments and cures.
The Melorheostosis Patient Map
The original goal of the Melorheostosis.org was to connect patients who have melo with others around the world. Life with a rare disease can be incredibly isolating. Doctors haven’t heard of the disease, no one knows how to pronounce it, and after diagnosis you’re left with more questions than answers.
The Melorheostosis Association is striving to be that light in the darkness to patients. By sharing your story and putting a pin in the map, you can connect with others around the world. Use the form to add your location to our patient map–showing your fellow patients they’re not alone, and highlighting the vast presence of melorheostosis patients worldwide.
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.
Join Our Facebook Community
Get to know other patients and supporters from around the world by joining our private Facebook group. Share your story, learn from others, and stay connected to the community.