Rare Disease Report

Rare Disease Communications Launches New Print Publication

FEBRUARY 05, 2015
PLAINSBORO, NJ (Feb. 5, 2015)—Rare Disease Communications (RDC), a growing healthcare communications and media company, today announced the debut of a new print publication, Rare Disease Report™, that will deliver crucial information directly to physicians to assist in diagnosing and treating patients suffering from rare diseases.
RDC, already renowned for its flagship website Rare Disease Report® (www.raredr.com) and weekly e-newsletter, meets the unique challenges the healthcare industry faces regarding clinical trials, products and education in the rare disease sector. Rare Disease Report is a trusted and authoritative source of news for physicians, nurses, scientists, and regulators. Rare Disease Report also attracts a wide audience including patients, advocacy groups and policy makers through its strong social media presence (Twitter, Facebook, LinkedIn, and YouTube).
By launching this monthly print publication, RDC is expanding access to crucial, timely – and reliable – information for more members of the rare disease community. Each monthly edition of Rare Disease Report will be mailed to more than 16,000 physicians and distributed at all major medical specialty and rare disease conferences.
Peter J. Ciszewski, president of RDC, said the new publication will keep the rare disease community abreast of the latest clinical news and inform physicians that for their more challenging cases, they should consider rare diseases.
There are an estimated 7,000 rare diseases. Each is fairly unique, but as a whole, the rare disease community is a large population. In the United States, 1 in 10 patients is coping with a rare disease, defined as a disease affecting 200,000 or fewer patients.

“The goal of Rare Disease Report is to provide physicians with credible resources to better diagnose and treat patients with rare diseases,” Ciszewski said. “It is an ambitious goal, but one we aspire to.”
Ciszewski praised the Rare Disease Report Editorial Advisory Board, whose members guide editorial mission and direction. Their expert advice enables Rare Disease Report to be “a practical resource for physicians,” he said.
For example, each edition of Rare Disease Report will be organized by medical specialty for physicians’ easy access to relevant information, and will feature updates and news. The premier issue of Rare Disease Report will feature:
  • A candid interview with Francois Nader, chief executive officer of NPS Pharma
  • ASH 2014 conference highlights, including promising new treatment for lymphoma
  • Latest government efforts to fight Ebola
  • Current and emerging treatments for HoFH
Issue #1 of Rare Disease Report will be unveiled during World Symposium, on Feb. 10 in Orlando, Fla. World Symposium is the premier conference for individuals wanting to learn more about lysosomal diseases and is a perfect conference to launch Rare Disease Report. Premier copies of Rare Disease Report will be available in the Exhibit Hall of the Conference. To receive a copy, sign up at www.raredr.com.
James Radke, Ph.D., vice president of editorial at RDC, said the print Rare Disease Report completes the communications spectrum, enabling RDC to share information in every significant format—via website, social media and print.
Distributing Rare Disease Report directly to doctors and other healthcare providers advances the company’s mission to encourage earlier recognition and management of orphan diseases by providing the latest news doctors need to consider rare diseases when confronting challenging cases or unusual symptoms, Radke said.

"Each month’s publication includes the latest news on clinical trials, regulatory and legislative matters, medical conference coverage, and patient advocacy initiatives,” Radke said. “These are all important and interconnected stories that the well-informed clinician needs. We are proud to be providing a new tool to encourage effective diagnosis and treatment of those who suffer.”
Rare Disease Communications is part of the Plainsboro, N.J.-based Michael J. Hennessy Associates, Inc. (MJH) family of businesses, which includes the acclaimed OncLive (www.onclive.com) platform of resources for the practicing oncologist. For more information, visit www.raredr.com.
Contact for RDC:
Peter Ciszewski, 914.413.4174 or pciszewski@raredr.com
Media contact for RDC Media Group:
Becky Taylor, 609.240.6886 or becky@btaylorpa.com

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