© 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

2018 Melorheostosis Conference “family”

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

Friday, October 15: 9 a.m. - 3 p.m. EDT

Medical Professionals*

 

Research Presentations, Updates, & Announcements

Networking with Researchers

*Patients & friends are welcome to attend, but please note

presentations and discussions are research-focused and technical in nature.

 

 

Saturday, October 16: 9 a.m. - 3:30 p.m. EDT

Medical Professionals & Patients/Friends

 

Melo Research Overview & Updates

Patient Q&A with Researchers

Case Studies - Private Patient Cases Presented to the Medical Panel

Patient & Supporter Sessions

Social Activity for All Attendees

Registration is FREE for any attendee!

The 12th International Melorheostosis Conference is being organized and funded by the Melorheostosis Association. Through generous donations and fundraising efforts by the MeloFund and many Melo supporters around the world, we hope to bring together the largest group of researchers and patients in history.

To quote one of our devoted research partners, Dr. Timothy Bhattacharyya, "collaboration is rocket fuel." We couldn't agree more and we're looking forward to bringing together everyone around the world during this conference.

 

We can't wait to see you online!

JOIN US VIRTUALLY FOR THE

12TH INTERNATIONAL

MELORHEOSTOSIS CONFERENCE

OCTOBER 15 & 16, 2021

Register Now

MEDICAL PROFESSIONALS:

Do you know a patient with Melo? Suggest they attend the conference.

Do you know another professional studying Melo or treating patients? Please have them contact