Wings of HOPE as we REACH for the CURE to
Multiple Hereditary Exostoses Syndrome / Multiple Osteochondroma Syndrome

Welcome ! to the MHE Research Foundation website
The MHE Research Foundation is a nonprofit 501(c)(3) organization dedicated to the support of,
Researchers, Physicians and Families,
Dealing with (MHE) Multiple Hereditary Exostoses Syndrome/(MO) Multiple Osteochondroma Syndrome
a Rare Genetic Bone Disease.
The MHE Research Foundations five point mission is to
REACH, advance & support the following.
RESEARCH, to assist and support researchers in order to one day discover a treatment/cure for MHE/MO/HME.
Our foundation works hand in hand with researchers from around the world in this mission.
EDUCATION, to provide vital clinical informational guides benefiting both families and physicians.
ADVOCACY, bring awareness about this rare neglected bone disease throughout the world.
CLINICAL, to help provide resources to families enabling them to locate the medical care they require.
HOPE,  the research being conducted on MHE/MO/HME & the informational resources will bring a better quality of
life to the families affected by this syndrome around the world.
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understanding of MHE through research and education.
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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 2/23/15 @ 12:0O pm Eastern time
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The MHE Research Foundationis proud to be a partnering society with ASMB  / MSTS  / CTOS
What is Multiple Hereditary Exostoses Syndrome?
Multiple Hereditary Exostoses (MHE) also often referred to as
Hereditary Multiple Exostoses (HME)
Multiple Osteochondromas (MO) is the preferred term used by the
World Health Organization "WHO".
MHE / MO / HME is a genetic bone disorder in which benign cartilage-capped bone tumors grow outward from the metaphyses of
long bones, growth plates or from the surface of flat bones throughout the body. The severity of this disease varies widely.
Some patients may have as few as two tumors, but most patients develop many more and the numbers of tumors can run into
the hundreds.

These cartilage-capped bone tumors are called Exostoses / Osteochondroma and may be sessile or pedunculated and vary
widely in size and shape. Pedunculated Exostoses / Osteochondroma is when a stalk is present, the structure is called
pedunculated.  These have a Broccoli like appearance with stalk and growth towards the end of the stalk. Sessile Exostoses /
Osteochondroma have a broad-base attachment to the outer bone, called the "cortex". These have a lumpy / bumpy appearance
(When no stalk is present, these are called sessile).

These Exostoses / Osteochondromas can cause numerous problems, including: compression of peripheral nerves or blood
vessels; irritation of tendons and muscles resulting in pain and loss of motion; skeletal deformity; short stature; limb length
discrepancy; chronic pain and fatigue; mobility issues; early onset arthritis; and an increased risk of developing malignant tumor
transformation (chondro-sarcoma) reported risk of 2%-5% over life time. It is not uncommon for MHE / MO / HME patients to
undergo numerous surgical procedures throughout their lives to remove painful or deforming Exostoses / Osteochondromas,
following these surgeries abnormal scarring can accrue with keloid formation.  MHE / MO / HME patient also need to undergo
surgeries to correct the bone deformities as well as limb length discrepancies and improve range of motion. New scientific
findings are also showing autism relevant behavioral phenotype connected to MHE / MO / HME.

Surgery, physical therapy and pain management are currently the only options available to MHE / MO / HME patients, but their
success varies from patient to patient and many struggle with chronic pain, fatigue and mobility problems throughout their lives.

MHE / MO / HME is a genetic autosomal dominant hereditary disorder affecting 1/50, 000 people. This means that a patient with
MHE / MO / MHE has a 50% chance of transmitting this disorder to his / her children.  Approximately 10% -20% of individuals
with MHE / MO / HME have the condition as a result of a spontaneous mutation are thus the first person in their family to be

There are two known genes found to cause MHE / MO / HME they are EXT1 located on chromosome 8q23-q24 and EXT2 located
on chromosome 11p11-p12. Approximately 60 to 70 % of mutations are located in the EXT1 gene and 20 to 30% are located in
the EXT2 gene. In 10 to 20% of the patients, no mutation is found.
Show your support for the MHE Research Foundation by wearing an MHE Bracelet designed by
Vincent (an 18 old who was born with MHE and has had over 25 surgeries to date) 100% of the
proceeds goes towards finding a cure for MHE. The cost is $ 5.00 each and can be ordered by
contacting Susan Eaton at
Thanks a Bunch
If you are in the need of obtaining an Orthopaedic Surgeon and family support,  Vice President and Coordinator Clinical and
Research Information. Sarah Ziegler at
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The MHE Research Foundation for other Orthopaedic and Research Educational Exhibits
During Society Meetings as well as Press Releases are located on a new webpage
Click Here
Opening remarks from Sarah Ziegler Foundation Vice
President during the 2012 MHE Research Conference
Opening remarks from Craig Eaton Foundation President
during the 2012 MHE Research Conference
The 5th International MHE Research Conference will be held June 24-26, 2016
Besides the Scientific sessions, Sunday June 26, 2016, MHE Patient/Family sessions will
be held as well as an MHE Clinic. Conference is being organized by Jeff Esko, Ph.D, Dror
Paley, MD, FRCSC and the MHE Research Foundation.  Please
Click Here for more
Also located on the conference webpage is Feb 2014 last conference report
Published in the Journal of Connective Tissue Research
Chest wall osteochondroma in children: a case series of surgical management.
Bakhshi H1, Kushare I, Murphy MO, Gaynor JW, Dormans JP.
J Pediatr Orthop. 2014 Oct-Nov;34(7):733-7. doi: 10.1097/BPO.0000000000000153.
To read full text publication
Click here

Hip joint osteochondroma: systematic review of the literature and report of three further cases.
Makhdom AM1, Jiang F2, Hamdy RC2, Benaroch TE2, Lavigne M3, Saran N2.
Adv Orthop. 2014;2014:180254. doi: 10.1155/2014/180254. Epub 2014 May 20.
To read this full text publication
Click here

Multiple hereditary exostoses (MHE): elucidating the pathogenesis of a rare skeletal disorder through interdisciplinary research.
Jones KB1, Pacifici M, Hilton MJ. Connect Tissue Res. 2014 Apr;55(2):80-8. doi: 10.3109/03008207.2013.867957. Epub 2014 Feb 12.
To read pull text publication
Click here

Perichondrium phenotype and border function are regulated by Ext1 and heparan sulfate in developing long bones: A mechanism likely
deranged in Hereditary Multiple Exostoses.
Huegel J, Mundy C, Sgariglia F, Nygren P, Billings PC, Yamaguchi Y, Koyama E, Pacifici M.
Dev Biol. 2013 Feb 28. pii: S0012-1606(13)00087-0. doi: 10.1016/j.ydbio.2013.02.008.

Validation of a new multiple osteochondromas classification through Switching Neural Networks.
Mordenti M, Ferrari E, Pedrini E, Fabbri N, Campanacci L, Muselli M, Sangiorgi L.
Click here to read full text Am J Med Genet A. 2013 Mar;161(3):556-60. doi: 10.1002/ajmg.a.35819. Epub 2013 Feb 8.

Loss of β-Catenin Induces Multifocal Periosteal Chondroma-Like Masses in Mice.
Cantley L, Saunders C, Guttenberg M, Candela ME, Ohta Y, Yasuhara R, Kondo N, Sgariglia F, Asai S, Zhang X, Qin L, Hecht JT, Chen D,
Yamamoto M, Toyosawa S, Dormans JP, Esko JD, Yamaguchi Y, Iwamoto M, Pacifici M, Enomoto-Iwamoto M.
Am J Pathol. 2013 Mar;182(3):917-27. doi: 10.1016/j.ajpath.2012.11.012.  

Multiple Hereditary Exostoses: Its Burden on Childhood and Beyond: Commentary on an article by A.L. Goud, MD, et al.:  
“Pain, Physical and Social Functioning, and Quality of Life in Individuals with Multiple Hereditary Exostoses in the Netherlands. A
National Cohort Study”.
Arkader A.
J Bone Joint Surg Am. 2012 Jun 6;94(11):e811-1
To read full text publication
Click here

Autism-like socio-communicative deficits and stereotypies in mice lacking heparan sulfate.
Irie F, Badie-Mahdavi H,
Yamaguchi Y.
Proc Natl Acad Sci U S A. 2012 Mar 12.
Selected Publications for full listing Click here
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Announcement of Dr. Dormans retirement from practice. The MHE Research Foundation would like thank him for all
his years of clinical care service to MHE patients. While Dr. Dormans will no longer be seeing patients he will continue
his educational and research efforts and his service to MHE Research Foundation. If you are in need of finding
another surgeon please contact us and Sarah Ziegler will assist you. She can be reached at the following:
Email:  or
Phone: 561-315-9149 or 917-274-5935