Website user information key:

The video presentations located on this website may take time to load due to the length, the flash media format used,
also depending on your Internet connection and web browser.
The Printer tabs are formated for Internet Explorer all other web browser users will need to use your main printer tab with
the web browser tool bar.
A few web-pages contained on this website may take a minute to load due to the size and multiple files contained within
them. All links & tool bar are active and checked weekly.
If you happen to click a link that is not working please notify using this comment form link or email the master at Thank you.
If you wish, you can download the PDF (adobe) files contained on this website. When you open the PDF files on your
computer, go to VIEW and click on READ OUT LOUD, sit back and listen to them read to you.
There are tables located in the Orthopaedic, Genetic and Pain sections with links to guide information, these are the same
links located in the website tool bar. This was done to insure easy use of our website.  Once you have a chance to review
the information located on this website, return visitors may simply want to check the announcement page  for a complete
listing of all new links and information that has been added to our website
Our goal is to make this website as user friendly as possible.

Privacy policy:

We are committed to the protection of the privacy of our website users and visitors. Our website systems do not automatically capture any of your personal information unless you specifically provide this information to us. All forms of communication are
considered confidential (
Online communication forms, email, on line submission, hard copy correspondence, phone
and will not be released to anyone without your written consent.
If you register with The MHE National Research Registry, once you agree with the terms as stated within the registry,  all
forms of communication associated with this registry, only the National Director of Research will have access to your
contact and personal information contained within this data base.  Principle Researchers upon your consent be provided
your contact information and will be clearly stated within each research project as some research projects require contact
information and others do not.  All Principle Researchers have signed certificates of cooperation with MHERF as has
MHERF's National Director of Research.

However, in order to reply to any MHERF generial inquiries and requests, you agree that:
1.        You must provide the MHE Research Foundation with certain contact information such as name, address, telephone
number and e-mail address.  

2.        When you provide MHERF with your contact information, this information will be placed into our secure database apart
from the MHE Research Registry. Only the 5 Board of Directors of MHERF may access your contact information.  All online
submission forms use (SSL 3.0, RC4 with 128 bit encryption (High); RSA with 1024 bit exchange) Internet Security.

3.        We may use this information to reply to your inquiries and used for the sole purpose of keeping you informed on the
activities of the MHE Research Foundation. When contacting you via email, any email address associated with the MHE Research
Foundation other than a Researcher or Medical Professional will always end with  If you receive
email that does not end this way, it was not sent by this foundation.

4.        The Privacy Policies of other organizations may differ from the MHE Research Foundation. Our safeguards & website
security for online submission is (SSL 3.0, RC4 with 128 bit encryption (High); RSA with 1024 bit exchange) as required by

5.       All hard copy (paper) confidential information, is located in a locked fire retardant safe.

If you have any questions about the privacy policies of this foundation's please email or call the toll free phone number and we
will be happy to answer any questions you may have concerning this foundation.
Toll Free Phone number: 1-561-315-9149
Email Board of Directors

Terms of use:

Your use of this website and any materials contained therein constitutes your acceptance of our terms of use.

1.        Any and all materials available at this website may be reproduced or distributed for personal, non-commercial, or
educational use ONLY.

2.        You may not download, reproduce, retransmit, republish and/or distribute copies of the materials available at this web
site, in whole or in part, in any manner, by any means whatsoever, without our prior written permission with the following
exception: You may make one single copy of the materials available at this website, solely for your personal, non-commercial, or
educational use, and only if you exercise due diligence in ensuring the accuracy of the materials reproduced, you do not modify
the materials in any way during reproduction, and you preserve any copyright or other notices contained in or associated with
them. All other rights reserved.

3.        You may not distribute the reproduced materials to others, whether or not in electronic form, whether or not in whole
or in part, whether or not for a charge or other consideration, without our prior written permission.

4.        You may not modify the reproduced materials, in whole or in part, in any manner, without our prior written permission.

5.        You may not use the reproduced materials in any advertising or publicity, or to otherwise indicate the publisher's
sponsorship of, or affiliation with MHERF.

6.        Commercial/For-Profit Businesses are expressly prohibited from reproducing or distributing any and all materials
available at this web site.
To obtain permission to reproduce or distribute materials available at this website,
please email Board of Directors

Notice of trademarks:

The names, trademarks, service marks, logos, graphics, photographs, renderings, graphics or other visuals on this web site are
subject to copyrights.

Linking to non-profit guides:

We encourage and appreciate links from your web site to this website.
You are welcome to link to  without permission. As a courtesy, if you link to this web site, or
include this website in an index,
please email webmaster
MHERF Privacy Policy & Terms of use & User key information
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Home page
Wings of HOPE as we REACH
for the CURE to
Multiple Hereditary Exostoses Syndrome
Multiple Osteochondroma Syndrome
You need Java to see this applet.
If you are Physician  or Genetic Counselor would a second opinion or assistance related to care, email Sarah Ziegler directly or
sign into the
physician registry.

At that point the MHE Research Foundation will put the Physician/Genetic Counselor directly in contact with a Physician or
Geneticists that could help sort out the medical issue directly. This assistance is offered to medical professional only.

If you are a patient wanting a second opinion please use the doctor directories located on this website, if after you still need
assistance contact Sarah Ziegler.

Written consent must be obtained to attach web pages or the files attached to this website, please email the webmaster.

Email the webmaster:
Materials on this website are protected by copyright
Copyright © 2014 The MHE Research Foundation

Disclaimer:   While many find the information useful, it is in no way a substitute for professional medical care.
The information provided here is for educational and informational purposes only. This website does not engage in the practice of medicine.
In all cases we recommend that you consult your own physician regarding any course of treatment or medicine.

This web page was updated last on 3/16/14, 12:0O pm Eastern time
The MHE Research Foundation, we comply with the HONcode standard for health trust worthy information: By the Health On the Net Foundation.      
here to verify.# HON Conduct 282463  and is the patient support link on the US Government Genetics Home Reference (
website, also linked for Patient Information on
The Diseases Database a cross-referenced index of human disease, as well as the
Intute: health & life sciences  a free online service  providing access to the very best Web resources for education and research located in the  UK
This website is regularly reviewed by members of the Scientific and Medical Advisory Board of the MHE Research Foundation.

All online submission forms use (SSL AES 256 bit encryption (High); RSA 1024 bit exchange) Protocol with
Privacy protection.
Our goal is to make this website as safe and user friendly as possible.
The MHE Research Foundation is a participating member organization of the
United States Bone and Joint Decade/Initiative,  (USBJD/I) & the  USBJD/I Rare Bone Disease Patient Network NBHA  National Bone Health Alliance
number of users on this website page now :

The MHE Research Foundation is proud to be an affiliate of the Society For Glycobiology
The MHE Research Foundationis proud to be a partnering society with ASMB  / MSTS  / CTOS