The main purpose of this website is to connect melorheostosis patients, doctors, and researchers interested in melorheostosis, with each other and with all available resources.   We have been building a melorheostosis community and working toward treatments and a cure since 2001.  I am a melorheostosis patient myself and until building this website, I had never met even a single fellow patient.  Now we all have an entire community of fellow patients and together we can search for answers.

If you are a melorheostosis patient, or the parent of a melorheostosis patient, and would like to join our growing community, please go to "Add Your Personal History" and follow the instructions to add the story of your experience in dealing with melorheostosis.  If you have questions you would like to pose to others in this community, please go to the “Discussion Board” and read about our Facebook page and how you can participate. If you have problems using any features of the website, or if you have any comments or questions, please don't hesitate to email me directly. 

We are very hopeful that every melorheostosis patient who visits this site will contact us so we, and the medical community, will know you exist.  If you prefer not to post your Personal History, please just follow the instructions on the homepage to “put yourself on the map” so you can be counted in our ever growing melorheostosis community. 

If you are a physician or other professional interested in melorheostosis, please feel free to contact us concerning research information or to get in touch with our Medical Panel.    Although the condition is rare, there is, in fact, a substantial amount of information available.  In addition, please see the papers posted under “Conference Reports” and the resources included in “Research Links.”

Onward,

Kathleen D. Harper

kathleen@melorheostosis.org

 

To contact Melorheostosis Association President, Jennifer Gordy:

 

gordyjm@yahoo.com     

 

To contact the Melorheostosis Association by mail:


Melorheostosis Association
410 East 50th Street
New York, NY 10022

 



 

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