CHICAGO, Feb. 22, 2011 /PRNewswire/ — Siren Interactive, a
relationship marketing agency specializing in rare diseases,
announces the publication of “Uncommon Challenges; Shared
Journeys,” a collection of 13 personal stories offering
intimate views into the lives of families affected by rare
disorders. The narratives reveal how parents — mothers in
particular — play critical roles in obtaining a correct diagnosis
and appropriate treatment for children with rare diseases. The
stories also show how caregivers in the rare disease community seek
and use information differently from other groups and have many
unmet needs for education and support.
Wendy White, president of Siren Interactive and herself the
mother of a child with a rare disorder, compiled the anthology,
leading with her own family’s story. Dr. Timothy Cote, director of
the FDA’s Office of Orphan Products Development, says the book
“strikes straight to the heart of the matter” by focusing on
patients and their families.
“Academics talk molecules, industry talks revenues, government
talks regulations, but parents’ words of their heartbreaking love
for their children with rare diseases are the truest words of all,”
he says. “I recommend this book to anyone who wants to
understand the power that’s driving the orphan drug movement.”
Rare disorders, also called orphan diseases, are defined as
conditions that affect fewer than 200,000 people in the U.S.
Despite the seemingly low number, such disorders affect one in 10
Americans, 80 percent of them children. The category includes
cystic fibrosis, hemophilia, muscular dystrophy and all childhood
cancers, as well as numerous diseases with lesser-known names. Rare
diseases are often difficult to diagnose, and approximately 70
percent of treatment therapies are prescribed off-label.
White believes the pharmaceutical industry can provide
significant educational services to parents of children with rare
disorders,
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