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Massachusetts General Hospital to host
premiere symposium for Degos disease
BOSTON - November 6, 2007 - The Massachusetts General Hospital
will host the first ever International Symposium on Degos Disease
and Related Vasculopathies on Friday, November 9 from 1:00 to 5:00
p.m. The conference, featuring sessions for both caregivers and
families, aims to bring together experts treating and researching
this rare and often fatal blood disorder. The symposium is co-sponsored
by the Pediatric
Rheumatology Division of the Mass General Hospital for
Children (MGHfC) and the Rheumatology
Division of the MGH.
Fifteen speakers representing MGH and institutions from around the
world will convene to share knowledge about possible causes and
treatments for Degos disease. Degos disease is a systemic disorder
that causes small and medium arteries to become blocked so that
blood can not easily move through the body. During the first stage
of the disease, characteristic skin lesions appear on the body that
can last for weeks to years. The second stage is characterized by
lesions in the brain and small intestine, which can lead to potentially
life-threatening complications. The exact cause of Degos disease
remains unknown.
Sandra Clancy, family adviser in the Coordinated Care Clinic at
MGHfC, had a young son die of Degos disease in 2004. "After
being diagnosed when he was five years old, my son was given an
innovative therapy that unfortunately did not work in his case,"
says Clancy, who helped organize the event. "Hopefully, in
this symposium setting, ideas and experiences can be exchanged that
will help other Degos disease patients in the future."
"Once you've seen the unique rash of Degos disease, you never
forget it," says John Whelan, MD, a pediatric rheumatologist
for the MGHfC. "We have the benefit with this symposium
of bringing together a large group of patients who can help us make
up for all the textbooks that provide no pictures and so little
information about this potentially fatal condition."
Following the afternoon symposium, participants will be joined by
rheumatologists from around the world for a study group on Degos
and related diseases at the American College of Rheumatology's annual
meeting at the Boston Convention Center.
Massachusetts General Hospital, established in 1811, is the original
and largest teaching hospital of Harvard Medical School. The MGH
conducts the largest hospital-based research program in the United
States, with an annual research budget of nearly $500 million and
major research centers in AIDS, cardiovascular research, cancer,
computational and integrative biology, cutaneous biology, human
genetics, medical imaging, neurodegenerative disorders, regenerative
medicine, transplantation biology and photomedicine. MGH and Brigham
and Women's Hospital are founding members of Partners HealthCare
HealthCare System, a Boston-based integrated health care delivery
system.
Media Contacts:
Jennifer Gundersen, MGH Public Affairs
Physician Referral Service: 1-800-388-4644
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