© Copyright 2001—2021 Melorheostosis Association.  All rights reserved.

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.)

Video small 4MB

Video medium 14MB

(Click to download )

 

 

 

 

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
Text Box: The National Institutes of Health (NIH)
is conducting a

 LONG TERM STUDY OF MELORHEOSTOSIS 
and is currently seeing patients

THE MELORHEOSTOSIS ASSOCIATION

To donate online, please click on the PayPal icon and fill in the brief form

 

Patients from around the world gathered virtually to hear the leading Melorheostosis experts share exciting research developments and to reconnect with each other in a Melorheostosis “family reunion.”

 

We were thrilled to welcome patients from across the U.S. as well as:

 

 

 

 

Register to hear session recordings for 60 days.

 

United Kingdom

Canada

Sweden

The Netherlands

Denmark

 

Australia

Norway

Brazil

Finland

Ireland

 

Scotland

Belgium

Romania

 

The Melorheostosis Association gratefully acknowledges the speakers who so generously shared their time and expertise with us. A heartfelt thank you to:

 

Dr. Timothy Bhattacharyya

Dr. Leslie Biesecker

Dr. John Fowlkes

Dr. Joan Marini

Dr. Geert Mortier

Dr. Michael Whyte

 

 The 12TH INTERNATIONAL

MELORHEOSTOSIS CONFERENCE

Was a GREAT SUCCESS!

October 15 & 16, 2021

Register Now