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Myeloma MInute
April 25, 2013
04.25.13
April 25, 2013
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Multiethnic Myeloma: New Study Explores Genomic Differences
Findings from the first study on genomic differences between multiple myeloma tumors derived from European Americans and African Americans have been published in the April 18 issue of the journal BLOOD. Researchers found a lower frequency of IgH translocations in AA compared with EA but otherwise similar genomic profiles. While more studies need to be done, the findings represent a first step toward an understanding of multiethnic myeloma. READ FULL TEXT

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FDA Launches New Patient Network: 'Patients Should Have A Bigger Voice'
On Wednesday, the U.S. Food and Drug Administration went live with a new website aimed at demystifying the regulatory process for consumers and patient advocates. The FDA Patient Network is designed to educate consumers on the process of getting medical devices and drugs from the idea stage to pharmacy and hospital shelves. The site serves as a gateway for caregivers, patients and patient advocates to email their views and hear live chats, webinars and open meetings, including those of the scientific advisory panels that meet to recommend for or against new drugs' approval by the agency. Consumers can also sign up to testify before or participate in some of the FDA's meetings. READ MORE

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As the Bill Turns: A Spin Through Important Successes on the Advocacy Front
If you doubt the power of citizen advocates, just check out our snapshot of oral drug coverage parity legislation in states across the nation! More than 800 myeloma advocates—from Wisconsin to Florida to California—have sent messages to their elected officials, and the bipartisan law has passed in nearly half the country. The latest victory occurred on Tuesday, when Oklahoma Governor Mary Fallin signed SB 765 into law making it the 23rd state to pass an oral anticancer access bill. AS THE BILL TURNS

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Sisters' Myeloma Activism Featured Center Stage on Philadelphia News Broadcast
Philadelphia's ABC-TV health reporter Ali Gorman R.N. interviewed myeloma patient and Philadelphia Multiple Myeloma Networking Group (PMMNG) founder Marilyn Alexander-Kostrow and her twin sister, Sharon Alexander, about the group's "Miles for Myeloma" fundraising walk or 5-K run on April 27th. The sisters reminisced about the beginnings of the support group. "We started with five people around someone's kitchen table," Marilyn said. Now, 19 years later, PMMNG reaches more than 300 people. WATCH THE VIDEO
 
 



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