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BioNews Services Puts Sharp Focus on Rare Disease Day 2018


Posted on: 28 Feb 18

DALLAS, Feb. 28, 2018 (GLOBE NEWSWIRE) -- BioNews Services, the leading online health, science and research publisher serving patients with rare diseases, is using its editorial resources this month in conjunction with Rare Disease Day today, February 28, to focus on the most pressing issues facing these patients.

BioNews, which produces more than 50 online disease-specific publications for patients with rare diseases, is providing coverage of many of the more than 50 events in the U.S. and District of Columbia, including on-site coverage of three events highlighting the need for additional research and needed changes in public policy.

“Every month nearly 1 million rare disease patients, caregivers and others in these communities look to us to provide the most up-to-date information about the latest developments in treating their condition,” said BioNews Services founder, publisher and CEO Chris Comish. “We owe it to them to make sure they also have information about the latest issues affecting research and public policy that impact efforts to meet the needs of the entire rare disease community.”

One of these issues is the ability of rare disease patients to access the best treatment. Greta Stifel suffers from a rare cancer and is the founder and president of the Stifle Cancer Foundation. “We have struggles that most others would never have to deal with. There isn’t even a specialist in my state who treats what I have.”

Included in the coverage of Rare Disease Day across all of BioNews’ patient communities will be on-site reporting from:

According to the National Institutes of Health, as many as 30 million Americans are living with a rare disease, defined as diseases or conditions that afflict fewer that one in 2000 people. EURODIS Rare Disease Europe estimates 30 million people in the E.U. are living with a rare disease.

Rare Disease Day falls on the last day of February each year and is observed in nearly 100 countries. It was created to raise awareness among the general public and decision makers about rare diseases and their impact on patients’ lives. This year’s theme is “Research.” Rare Disease Day is organized by EURODIS Rare Disease Europe and sponsored in the United states by NORD and more than 270 affiliated patient organizations.

BioNews Services is the only publisher of patient-friendly original content in real time covering the latest therapeutics, research, and advocacy news, written by PhD scientists, journalists, and patient columnists and targeted to specific rare disease communities. Our publications cover the gamut of rare diseases, from cystic fibrosis, muscular dystrophy and spinal muscular atrophy to pulmonary arterial hypertension and immuno-therapy targeted rare cancers.

For more information about BioNews Services and our publications, please contact Founder, Publisher and CEO Chris Comish at cbc@bionewsservices.com or Editor and Director of Business Development John Gillespie at john.gillespie@bionewsservices.com. General inquiries can be directed to info@bionewsservices.com.

GlobeNewswire
globenewswire.com

Last updated on: 28/02/2018

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