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PR Newswire
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Red Tape Hinders Treatment For Girl With Rare Disease

PHILADELPHIA, June 21, 2012 /PRNewswire/ -- There's a drug available to treat the symptoms of 10-year-old Brooke Foster's life-threatening, rare disease, but it isn't for sale in the United States.

Brooke's mom, Kelli Foster, struggled for years to get her daughter's disease, mastocytosis, diagnosed. Now the New Jersey mom is fighting to have a drug that can treat the symptoms -- severe allergic reactions to medications, flavoring, dyes, preservatives, temperature changes, fragrances -- imported from Europe. The drug won't just be for Brooke; Kelli recently learned she has mastocytosis too.

Foster learned about the treatment, a form of ketotifen, while attending DIA's Conference on Rare Diseases and Orphan Products last year as part of the organization's Patient Advocacy Fellowship Program. Since then, she's been working with the U.S. Food and Drug Administration (FDA) for help in importing one shipment of the drug, but has not yet been successful.

"DIA made it possible for me to speak and be heard about the challenges my little girl has had to endure on a daily basis, the process I had to go through to discover a cure after years of being misdiagnosed and taking the wrong medications, as well as the frustration that medication exists to help treat the symptoms of our disease but is not available to us in the U.S.," Foster said.

Foster will be speaking on Monday, June 25 at the DIA 2012 48th Annual Meeting during a media roundtable from 11 a.m. to noon at the Pennsylvania Convention Center. Other participants include Sandra Kweder, deputy director of FDA's Office of New Drugs, and Craig Lipset, head of clinical innovation at Pfizer. Foster will talk about orphan drug development from a patient perspective.

ABOUT DIA
DIA is a neutral, global, member-driven association of nearly 18,000 professionals involved in the discovery, development and life cycle management of pharmaceuticals, biotechnology and medical devices. Through international educational offerings and myriad networking opportunities, DIA provides a global forum for knowledge exchange that fosters the innovation of products,technologies and services to improve health worldwide. Headquarters are in Horsham, PA, USA, with offices in Basel, Switzerland, Tokyo, Japan, Mumbai, India, and Beijing, China.

Contact: Joe Krasowski, Marketing Communications Manager
215-293-5812, joe.krasowski@diahome.org

SOURCE DIA

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© 2012 PR Newswire
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