Rare Disease Report® and National Organization for Rare Disorders (NORD)® Announce Editorial Collaboration

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Leaders in providing information about rare diseases join together to enhance communication of important news and insight.

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"By collaborating, Rare Disease Report brings NORD’s expertise to another platform of clinicians and other stakeholders,” said Peter J. Ciszewski, president of RDC.

Today, Rare Disease Report®, the flagship property of Rare Disease Communications (RDC)®, a growing healthcare communications and media company, and the National Organization for Rare Disorders (NORD)®, the leading independent nonprofit organization committed to the identification, treatment and cure of rare diseases, announced a new editorial collaboration.

The collaboration will focus on reaching the physician and advocacy communities with important news and insight on rare diseases, according to Peter J. Ciszewski, president of RDC. “Both NORD and Rare Disease Report are leaders in providing information about orphan diseases to the rare disease community. By collaborating, Rare Disease Report brings NORD’s expertise to another platform of clinicians and other stakeholders,” said Ciszewski.

“This collaboration combines NORD’s leadership in driving progress to help America’s 30 million rare disease patients and their families – two-thirds of whom are children – and Rare Disease Report’s success in reporting on the latest news and events in rare diseases,” said Peter L. Saltonstall, president and CEO of NORD. “We look forward to sharing our expertise and that of our more than 230 member organizations.”

Each edition of the Rare Disease Report print publication will feature a new NORD column titled “Voice of the Community.” NORD will work with its more than 230 member organizations that represent disease-specific patient organizations to provide the content. Information provided by NORD will also appear on a designated page on Rare Disease Report’s website.

“NORD wants to help the community of stakeholders better understand the patient perspective and the critical issues in rare diseases,” added Saltonstall.

Both parties expect that better patient care and increased understanding of rare diseases will result from their collaboration.

About Rare Disease Report
Rare Disease Report is a product of Rare Disease Communications, part of the Plainsboro, N.J.-based Michael J. Hennessy Associates, Inc. family of businesses, which includes the acclaimed OncLive platform of resources for the practicing oncologist. Its new print publication, Rare Disease Report, delivers crucial information directly to physicians to assist in diagnosing and treating patients suffering from rare diseases. The publication is mailed to more than 16,000 physicians and distributed at all major medical specialty and rare disease conferences. For more information, visit http://www.raredr.com.

About the National Organization for Rare Disorders (NORD)®
Established in 1983, the National Organization for Rare Disorders (NORD) is the primary nonprofit organization representing all patients and families affected by rare diseases in the U.S. NORD is committed to the identification, treatment and cure of all 7,000 rare diseases that affect 30 million Americans, or 1 in every 10 people. NORD provides programs of advocacy, education, research, and patient and family services to improve the lives of all people living with rare diseases. NORD represents more than 230 disease-specific member organizations and collaborates with many other organizations in specific causes of importance to the rare disease patient community. Join NORD at http://www.rarediseases.org and on Twitter at @RareDiseases.

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Media Contacts
For National Organization for Rare Disorders (NORD): Jennifer Huron, 203-304-7258, jhuron(at)rarediseases(dot)org
For Rare Disease Communications: Becky Taylor, 609-240-6886, becky(at)btaylorpa(dot)com

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Becky Taylor

Jennifer Huron
@RareDR
since: 04/2012
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