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Latest rare disease Stories

2014-09-10 08:25:38

CRANFORD, N.J., Sept. 10, 2014 /PRNewswire/ -- In light of the extensive issues facing patients and carers affected by rare disease, Atlantis Healthcare has published a white paper to educate the healthcare industry about their unmet needs, along with proven support approaches to address the challenges found in this important, yet often overlooked, area of care. Living with any chronic condition can be demanding, but rare diseases bring a unique set of obstacles for patients and...

2014-08-13 08:29:24

WASHINGTON, Aug. 13, 2014 /PRNewswire/ -- The National Organization for Rare Disorders (NORD) today announced the agenda for the Rare Diseases and Orphan Product Breakthrough Summit, to be held October 21-22, 2014 at the Hilton Mark Center in Alexandria, VA. Photo - http://photos.prnewswire.com/prnh/20140812/135518 This annual event is the innovative hub for all stakeholders in the rare disease and orphan products community - providing an educational platform for pharmaceutical, biotech,...

2014-08-06 16:28:42

Input will help shape the role of public contributions to orphan drug approvals OTTAWA, Aug. 6, 2014 /CNW/ - The Honourable Rona Ambrose, Minister of Health, announced today that the Government of Canada has launched a pilot project targeting patient input from Canadians with rare diseases to help inform future reviews of orphan drugs. As announced in October of 2012, Health Canada has been developing an Orphan Drug Framework to spur innovation and research into new treatments...

2014-08-05 11:43:07

University of Pittsburgh Schools of the Health Sciences Newly implemented screening guidelines and improved, highly effective drug therapies could make hepatitis C a rare disease in the United States by 2036, according to the results of a predictive model developed at the University of Pittsburgh Graduate School of Public Health. The results of the analysis, funded by the National Institutes of Health (NIH) and performed with the University of Texas MD Anderson Cancer Center, are...

2014-08-04 23:00:29

Newly implemented screening guidelines and improved, highly effective drug therapies could make hepatitis C a rare disease in the United States by 2036, according to the results of a predictive model developed at the University of Pittsburgh Graduate School of Public Health Pittsburgh, Pennsylvania (PRWEB) August 04, 2014 Newly implemented screening guidelines and improved, highly effective drug therapies could make hepatitis C a rare disease in the United States by 2036, according to the...

2014-06-20 23:08:51

In an environment where orphan drug development is on an all-time high and Contract Research Organizations are in demand, orphan reach, who pioneer a unique global patient access solution, has expanded its presence to the US. Audubon, New Jersey (PRWEB) June 20, 2014 orphan reach, the “rare” Contract Research Organization (CRO) focusing on global orphan drug development, has today announced the opening of new offices in New Jersey, USA to target the growing opportunities in the orphan...

2014-06-11 12:28:34

Uniquely Positioned to Provide Big Data Analytics for Over 6,800 Rare Diseases BRANFORD, Conn., June 11, 2014 /PRNewswire/ -- BioXcel Corporation, announced today its first-in-class cloud based Pharma big-data analytics platform, PharmGPS(TM) now has a dedicated Orphan Disease suite to aid in the discovery, development, licensing and commercialization of drugs for the approximately 7,000 Rare and Ultra Rare Diseases. Partners will benefit from real-time multi-factorial analytics to...

2014-06-04 08:33:48

WASHINGTON, June 4, 2014 /PRNewswire-USNewswire/ -- In a letter submitted today to the U.S. Food and Drug Administration (FDA), the National Organization for Rare Disorders (NORD) urged Commissioner Margaret Hamburg to give serious consideration to the concerns of the rare disease community when setting policy regarding official names for biologics, including biosimilars. With over 7,000 rare diseases identified and 30 million Americans affected, the patient population represented by NORD is...

2014-05-22 23:11:58

Researchers, pharmaceutical companies, advocacy organizations and healthcare providers can access large sets of patient-provided de-identified data to speed research. San Mateo, Calif. (PRWEB) May 22, 2014 PatientCrossroads, pioneer of the groundbreaking CONNECT patient registry platform, has expanded the open availability of disease-specific patient data with the launch of its CONNECT Data Portal. The Data Portal allows any authorized user to see the de-identified patient data that has...

2014-05-09 08:26:43

WHIPPANY, N.J., May 9, 2014 /PRNewswire/ -- Bayer HealthCare was honored by the National Organization for Rare Disorders (NORD) at their annual "Portraits of Courage" Celebration in Washington, DC on May 8. The event recognized several individuals, foundations and innovator companies that have made substantial contributions to improving the lives of people affected by rare disorders. NORD's celebration of progress is an annual event open to everyone with an interest in rare...


Word of the Day
caparison
  • A cloth or covering, more or less ornamented, laid over the saddle or furniture of a horse, especially of a sumpter-horse or horse of state.
  • Clothing, especially sumptuous clothing; equipment; outfit.
  • To cover with a caparison, as a horse.
  • To dress sumptuously; adorn with rich dress.
This word ultimately comes from the Medieval Latin 'cappa,' cloak.
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