Melorheostosis

WELCOME to the MELORHEOSTOSIS ASSOCIATION

The Melorheostosis Association is a 501(c)(3) not-for-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. For a full list of our Board of Directors, click here.

Our world renowned Scientific and Medical Advisory Panel is led by Dr. Frederick Kaplan, Chief of the Division of Metabolic Bone Diseases and Molecular Medicine at the University of Pennsylvania. For a full list of the Medical Panel, Click here

Melorheostosis.org is:

-- the largest database of melorheostosis patients in the world

-- a community of melorheostosis patients and their families joined to

share information, offer support, and seek answers together

-- a source of information for treating physicians, researchers and other professionals

Melorheostosis is a rare and progressive disorder characterized by hyperostosis (thickening) of the cortical bone. Melorheostosis affects both bone and soft tissue growth and development. Melorheostosis can result in severe functional limitation, extensive pain, soft tissue contractures, and limb, hand an/or foot deformity. The age of diagnosis is typically based on the severity of onset and symptoms. On x-rays, the appearance of melorheostosis been likened to flowing, melted candle wax.

Diseases associated with melorheostosis include, osteopoikilosis, osteopathia striata, scleroderma and Buschke-Ollendorff syndrome.

Note: for additional information, please see the “buttons” on the left, including “Research Links” and “Brochure.”

Support the Melorheostosis Association

WE CAN’T DO IT ALONE!

Please Donate

Help the Medical Community Know How Many People are Affected by Melorheostosis

“ PUT YOURSELF ON THE MAP ”

Through the power of the Internet, we have established a community of melorheostosis patients from around the world. Our isolation as individual patients has ended and we have come together, along with our dedicated Medical Panel, to find answers. Below are links to maps showing the location of melorheostosis patients who have posted their personal histories on this website. We will also be adding patients who contact us but do not wish to post their personal history (see instructions below).

World Map United States – Detail Map United Kingdom – Detail Map

We are hoping even more melorheostosis patients will come forward this year. Please contact us soon so we can “put you on the map.” You have two options:

1. To post your Personal History, go to the “Add Personal History” link on the left of this page and fill in the simple form in your own words. Your information will be posted under “Personal Histories” and you will be added to the map.

2. If you prefer not to post your personal history, just email us your name (first, or first and last, as you prefer), geographic location and where you are affected by melorheostosis (to: map@melorheostosis.org). This information will not be posted and your information will be kept confidential but you will be added to the map.

Let the medical community know you exist. Every “dot” on these maps represents a patient and a family facing the challenge of coping with melorheostosis. Stand up with them and be counted. We have strength in numbers none of us can possibly have alone. We look forward to hearing from you.