WELCOME to the MELORHEOSTOSIS ASSOCIATION

© Copyright 2001—2013 Melorheostosis Association.  All rights reserved.
Text Box: WHAT IS MELORHEOSTOSIS? Text Box: WHO ARE WE?

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. Geert Mortier, 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 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. 

 

For additional information, please see the “TABS” on the left, including “Research Links,” 2012 Conference Paper” and “Brochure.” 

 

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

 

 

 

 

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.

 

 
Text Box: NEWS and ANNOUNCEMENTS Text Box: Melorheostosis Video (5 min.) Text Box: IF YOU ARE PLANNING SURGERY PLEASE CONTACT US IMMEDIATELY Samples of tissue, such as bone, skin or soft tissue, from your surgery are urgently needed for research. It is important that arrangements be made as far in advance as possible.  There is no cost to you or your doctor. You can make a valuable contribution to the search for treatments and a cure.  For questions or information email: If you are a physician treating a melorheostosis patient who is planning surgery,  please discuss with the patient (or the parent of a child with melorheostosis) the option of donating tissue and/or refer them to this website for further information.  We would be happy to discuss  the procedure with you or with them.   ————————————————— For a document discussing considerations in the especially if you are considering contracture release on a child with melorheostosis. Text Box: MELORHEOSTOSIS ASSOCIATION SCIENTIFIC AND MEDICAL ADVISORY PANEL We are happy to announce Dr. Geert Mortier, M.D., Ph.D., will serve as Chair of the Melorheostosis Association Scientific and Medical Advisory Panel. Dr. Mortier is Director of the Department of Medical Genetics at Antwerp University Hospital, as well as Professor of Medical Genetics at the University of Antwerp and Ghent University, and has been an esteemed member of our Medical Panel since 2004. We are happy to announce Dr. Frederick S. Kaplan, M.D. will serve as Chair Emeritus of the Melorheostosis Association Scientific and Medical Advisory Panel. We are grateful to Dr. Kaplan for invaluable guidance and leadership during his service as Chair since 2003. We welcome two new members to our Scientific and Medical Advisory Panel from the Mayo Clinic: Bart L. Clarke, M.D. Associate Professor of Medicine Salman Kirmani, MBBS Assistant Professor of Medical Genetics and Pediatrics 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. Kathleen Harper

Video small 4MB  Video medium 14MB (Quick Time required)  

Kathleen@melorheostosis.org

Surgical Management of Melorheostosis  click here,

Historic Melorheostosis Association Conference

November 1-3, 2012

Mayo Clinic, Rochester, MN

 

The 8th Melorheostosis Association Conference brought together the largest group of melorheostosis patients ever assembled. Patients and their families met with Medical Panel members and Mayo Clinic doctors to move us closer to our goal of finding the cause, treatments and a cure. We also shared a lot of laughter as everyone joined the ever-expanding melorheostosis “family.” Look for details in the next newsletter.  If you are not on our mailing list,  please contact Jen Gordy, President, gordyjm@yahoo.com. For more photos click here.
Description: http://www.ua.ac.be/images/ua/container12268/Geert%20Mortier4.JPGDescription: aculty photo

Kathleen@melorheostosis.org