July 11, 2006

Patients With Rare Disease Work to Jump-Start Research

Advocacy Groups Create Their Own Tissue Banks To Aid in Drug Development

Kathy Giusti, 47 years old, was diagnosed a decade ago with multiple myeloma, an incurable and rare cancer of the blood. With only 16,000 new cases diagnosed a year, Ms. Giusti, a former pharmaceutical-company executive, knew that it would be hard to get drug companies and researchers to study her disease.

When she asked researchers at a 2004 meeting what it would take to speed up the search for treatments, she says they told her that "the biggest obstacle was getting tissue from multiple-myeloma patients to study and test." So she decided to give them something to get started: In 2005, the Multiple Myeloma Research Consortium, founded by Ms. Giusti, started its own biospecimen bank.

Read the full article at WSJ.com

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