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Welcome to the MELORHEOSTOSIS ASSOCIATION
Text Box: WHO ARE WE ? Text Box: WHAT IS MELORHEOSTOSIS?

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 Medical Advisory Panel is led by Dr. Michael P. Whyte, Professor, Washington University School of Medicine; Director, Center for Metabolic Bone Disease and Molecular Research, Shirners Hospital for Children, St. Louis, MO. 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 resource 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. 

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

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Melorheostosis Video (5 min.)

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(Click to download )

 

 

 

 

World Map

United States Detail Map

United Kingdom Detail Map

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

 

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).

We are hoping even more melorheostosis patients will come forward this year. Please contact us 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 last as you prefer), geographical 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.

Stay In Touch—Join Our Mailing List

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Text Box: IF YOU ARE CONSIDERING CONTRACTURE RELEASE SUGERY ON A CHILD WITH MELORHEOSIS PLEASE READ Text Box: PLEASE CONSIDER A DONATION The Melorheostosis Association is an all-volunteer charitable organization of patients and parents of patients and we struggle every single day. Every dollar you donate goes directly to our mission to find the cause, treatments and a cure and is tax deductible. Please use the Donate button above or send a check directly to Melorheostosis Association 410 East 50th Street New York, NY 10022 We welcome donations of any size– every dollar helps and is sincerely appreciated. We also welcome your interest, your comments and any questions you may have

Surgical Management of Melorheostosis click here

THE MELORHEOSTOSIS ASSOCIATION

To donate online, please click on the PayPal icon and fill in the brief form
Text Box: Applications Currently Being Accepted For Patients to be Seen in the LONG TERM STUDY OF MELORHEOSTOSIS At The National Institutes of Health (NIH)  

For Information and how to apply, click here

13TH INTERNATIONAL

MELORHEOSTOSIS CONFERENCE

 

Was A Great Success!

 

October 20-22, 2023

Bethesda, Maryland, USA

 

The Melorheostosis Association offers heartfelt thanks to the speakers who so generously shared their expertise, experience and insights with patients from as far away as Australia, as well as fellow members of the medical community: 

 

Dr. Timothy Bhattacharyya, National Institutes of Health

Dr. Joan Marini, National Institutes of Health

Dr. Matthew Greenblatt, Weill Cornell Medicine

Dr. Matthew Warman, Boston Children’s Hospital, Harvard Medical School

Dr. Nara Sobreira, Johns Hopkins

Nancy Spencer, National Institutes of Health Research Nurse

 

Special thanks to Dr. Michael Whyte, Melorheostosis Association Medical Panel Chair.