from new mutations in the gene; and
WHEREAS, The symptoms of FOP usually appear in the first or
second decade of life, with the majority of patients diagnosed
by 10 years of age, depriving children of normal development;
and
WHEREAS, Most children born with FOP tend to have malformed
toes, which helps distinguish this disorder from other skeletal
problems, and a child with FOP typically develops extra-skeletal
bones at the neck and on the shoulders, arms, chest area, legs
and feet; and
WHEREAS, FOP is so rare, it is considered an orphan disease;
and
WHEREAS, Since the disease affects so few people, its
symptoms are often misdiagnosed as cancer or fibrosis; and
WHEREAS, Currently there are 285 confirmed cases of FOP in
the United States; and
WHEREAS, In 1991, the FOP Laboratory at the University of
Pennsylvania was founded by Eileen Shore, Ph.D., and Frederick
Kaplan, M.D., and, in 1997, the Center for Research in FOP and
Related Disorders was established by Dr. Kaplan and Dr. Shore;
and
WHEREAS, There is no cure or approved treatment for FOP; and
WHEREAS, Activities that increase the risk of falling or soft
tissue or joint injury should be avoided as even minor trauma or
surgical removal of extra bone growths may provoke additional
bone formation; and
WHEREAS, As a result of limited treatment options, the median
age of survival is 40 with proper management, but a delayed
diagnosis and surgical interventions can worsen FOP; and
WHEREAS, A number of pharmaceutical companies focused on rare
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