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Last updated on April 18, 2014 at 14:49 EDT

Latest rare disease Stories

2014-04-16 08:32:13

Series of RARE Disease Toolkits Enable Advocates, Patients and Caregivers to Empower Themselves and Inspire Others ALISO VIEJO, Calif., April 16, 2014 /PRNewswire/ -- With 1 in 10 Americans living with rare diseases, the need for access to powerful, actionable information has never been greater. Global Genes(TM) is proud to launch RARE Toolkits, a platform of resources designed to educate, empower and engage the rare disease community. These free resources, available at...

2014-04-04 12:27:44

NORD to Present Awards at "Portraits of Courage" Celebration on May 8th in Washington, DC WASHINGTON, April 4, 2014 /PRNewswire-USNewswire/ -- Rare disease patient advocates, two members of Congress and companies that have brought novel new therapies to patients will be honored at the "Portraits of Courage Celebration" of the National Organization for Rare Disorders (NORD) on Thursday, May 8, at the National Building Museum in Washington, DC....

2014-04-03 09:57:22

Little research on the treatment of rare and orphan diseases has been conducted in this area From 1997 to 2010, despite promises made by the international scientific community, pharmacogenomic research produced few studies focusing on rare, orphan and tropical diseases prevalent in developing countries. Catherine Olivier, bioethics research at the University of Montreal's School of Public Health, recently published these findings in the journal Global Public Health. Pharmcogenomics is a...

2014-03-25 16:25:48

Panel's Expertise Will Guide Funding Priorities and Community Engagement WASHINGTON, March 25, 2014 /PRNewswire-USNewswire/ -- The Patient-Centered Outcomes Research Institute (PCORI) Board of Governors today approved 13 people as members of PCORI's new Advisory Panel on Rare Disease. It is one of two new advisory panels for which the Board approved members at its meeting today; the other focuses on clinical trials. The diverse group of panelists will apply their experience and...

2014-03-06 23:26:16

MarketReportsOnline.com adds "Europe Orphan Drug Market Outlook 2018" report to its research store. Dallas, Texas (PRWEB) March 06, 2014 Purchase the report for 20% discount. Offer valid until 31st March 2014. The orphan drugs enjoy significant competitive advantages in the market owing to the market exclusivity period after the drug has been authorized. Through this clause, the manufacturer of orphan drugs is given a monopoly status in the market because according to the law,...

2014-02-28 12:27:25

WHIPPANY, N.J., Feb. 28, 2014 /PRNewswire/ -- Bayer HealthCare is joining the National Organization for Rare Disorders (NORD) and others in raising awareness of Rare Disease Day, which is being celebrated today around the world. (Photo: http://photos.prnewswire.com/prnh/20140228/NY74321 ) Rare Disease Day 2014 activities by Bayer will include participation in state government awareness events and employee engagement via the NORD "Handprints Across America" photo gallery. "While...

2014-02-28 04:21:47

LEXINGTON, Massachusetts, February 28, 2014 /PRNewswire/ -- Global Initiatives Underscore Shire's Long-term Commitment to the Rare Disease Community Shire plc (LSE: SHP, NASDAQ: SHPG) today announced its support of Rare Disease Day and invites others to join them in its continued commitment to the rare disease community. Observed annually on the last day of February, Rare Disease Day is coordinated at the international level by the European Organisation for Rare...

2014-02-27 23:03:20

Resolution Promotes Awareness of Rare Diseases Sacramento, CA (PRWEB) February 27, 2014 Today at the state Capitol, Assemblymember Kevin Mullin (D-South San Francisco), in partnership with the California Healthcare Institute (CHI), presented House Resolution 32 recognizing Feb. 28 as Rare Disease Day in California. CHI is a nonprofit, public policy research organization, representing leading California academic institutions, biotechnology, medical device, diagnostics and pharmaceutical...

2014-02-27 16:27:43

AccountingDepartment.com, long time supporter and fund raiser for the Alternating Hemiplegia of Childhood Foundation, announced support of Rare Disease Day on February 28, 2014. POMPTON PLAINS, N.J., Feb. 27, 2014 /PRNewswire/ -- AccountingDepartment.com announced its support for Rare Disease Day, an annual event that focuses on raising awareness for patients and families living with rare diseases. Held on the last day of February each year, Rare Disease Day is a global event meant...

2014-02-27 12:24:59

Thursday, February 27, 2014 12:00 noon - 1:30pm WASHINGTON, Feb. 27, 2014 /PRNewswire-USNewswire/ -- Jonny Lee Miller, who stars as Sherlock Holmes in the CBS hit TV show Elementary, is headed to Capitol Hill on Thursday, February 27, to speak at the Rare Disease Congressional Caucus briefing about the need to spur the development of lifesaving treatments for rare disease patients. The briefing, entitled "Science Behind Rare Disease Policy," is sponsored by Shire & Genzyme....