© Copyright 2001—2020 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

 

 Dr. Michael P. Whyte, M.D.

Chair of the Melorheostosis Association

Medical Panel

 

has published a research paper on melorheostosis in the medical journal Bone.

 

For an explanation of the paper in layman’s terms

as well as a link to the full article, click here

 

 

**  Save the Date  **

 

2020 Melorheostosis Conference 

October 23—25, 2020

Bethesda Marriott Suites

6711 Democracy Boulevard          Bethesda, MD 20817

 

Mark your calendar and plan to be part of the 2020 Melorheostosis Conference Family!  Come to meet fellow patients and hear all the latest, exciting news from the dedicated medical experts working tirelessly on our behalf. 

2018 Melorheostosis Conference “family”

Text Box:  2019 SUMMARY UPDATE FROM NIH 
“It’s been a wonderful year for melorheostosis at NIH.  In September, we presented data supporting a second gene for melorheostosis in a subset of patients. We hired a laboratory person dedicated to working on melorheostosis-derived patient cells.  We saw 8 new patients and 2 returning patients.  We performed one bone biopsy and three skin biopsies.  It remains amazing how much we have learned from the patients who visited NIH and the precious samples they have given us.  In 2020, we hope to develop models and systems that allow us to study melorheostosis in greater depth.”

Dr. Timothy Bhattacharyya
Head, Clinical and Investigative Orthopaedic Surgery

 

 

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