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New Book From Siren Interactive Reveals How Parents of Children With Rare Diseases Play Major Roles in Diagnosis and Treatment

Tue, 02/22/2011 - 6:34am
Bio-Medicine.Org

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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