Multiple Hereditary Exostoses / Multiple Osteochondroma is a rare genetic bone condition in which multiple benign cartilage-capped bone tumors called exostoses / osteochondromas develop. They grow outward from the metaphyses of long bones, growth plates or from the surface of flat bones throughout the body.
I have not seen any direct research on the EXT genes that would connect 12 deficiency to MHE/MO/HME. Neuropathy has is seen in MHE patients. Periphial neuropathy this all depends of the context in the use of this term... Regards Sarah
Our family has a B-12 deficiency and periphial neuropathy that seems to be associated with our HMO. Do you have any information about this? Laurie
The MHE Research Foundation is always happy to assist MHE / MO / HME families in obtaining the medical information they need. Please feel free the to post your question and comments. Sincerely Sarah Ziegler The MHE Research Foundation Vice President & National Director of Research Executive Director, The MHE National Research Registry & Coordinator of Clinical Information Liaison Officer, University of Antwerp, Department of Genetics, Belgium Liaison Officer, Rizzoli Orthopaedic Institute, Genetics Unit, Bologna Italy
|The MHE Research Foundation||
The MHE Research Foundation is a nonprofit 501(c) (3) organization for the support of researchers, families & physicians dealing with (MHE) Multiple Hereditary Exostoses (MO) Multiple Osteochondroma a rare genetic bone disease.
The MHE Research Foundation Five point mission is to REACH, advance and support the following.
RESEARCH, to help researchers one day find a treatment / cure for MHE. Our foundation works hand in hand with researchers from around the world on this mission.
EDUCATION, to provide clinical informational guides to help benefit both families and physicians.
ADVOCACY, bring awareness about this disease in all areas throughout the world.
CLINICAL, to help provide resources to families enabling them to find the medical care they need.
HOPE, is that the research being conducted on MHE, the informational resources will bring a better quality of life to the families affected by this disease.
CoRDS, or the Coordination of Rare Diseases at Sanford, is based at Sanford Research in Sioux Falls, South Dakota. It provides researchers with a centralized, international patient registry for all rare diseases. This program allows patients and researchers to connect as easily as possible to help advance treatments and cures for rare diseases. The CoRDS team works with patient advocacy groups, individuals and researchers to help in the advancement of research in over 7,000 rare diseases. The registry is free for patients to enroll and researchers to access.
Enrolling is easy.
After these steps, the enrollment process is complete. All other questions are voluntary. However, these questions are important to patients and their families to create awareness as well as to researchers to study rare diseases. This is why we ask our participants to update their information annually or anytime changes to their information occur.
Researchers can contact CoRDS to determine if the registry contains participants with the rare disease they are researching. If the researcher determines there is a sufficient number of participants or data on the rare disease of interest within the registry, the researcher can apply for access. Upon approval from the CoRDS Scientific Advisory Board, CoRDS staff will reach out to participants on behalf of the researcher. It is then up to the participant to determine if they would like to join the study.
Visit sanfordresearch.org/CoRDS to enroll.
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