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Latest Rare diseases Stories

2013-10-02 23:01:39

Despite federal incentives for drug companies to create treatments for rare diseases, thousands of people are still searching for lifesaving therapies. In many cases, patients and those working on their behalf are taking matters into their own hands. Bethesda, MD (PRWEB) October 02, 2013 Katheryn Elibri, whose 7-year-old daughter has a rare genetic disease known as CDKL5 and has seizures almost daily, helped begin a foundation to fund research for a cure. Other parents—like Lisa Schill,...

2013-09-30 23:18:18

The Rare Disease Panel will present on October 7, 2013 at 9:45 a.m. Bethesda, MD (PRWEB) September 30, 2013 WHAT: Thirty years after the adoption of the Orphan Drug Act, patients with rare diseases still face incredible obstacles. At the U.S. Conference on Rare Diseases and Orphan Products, with its theme of “The New Era in Health Care,” patients and patient advocates will discuss: Getting an accurate diagnosis Supporting research for and the development of treatments Assuring...

2013-09-27 23:03:52

Everolimus Drug Study with TSC Patients to Measure Impact on Brain New York, NY (PRWEB) September 27, 2013 Bcureful® presented a check in the amount of $15,000.00 to Dr. Orrin Devinsky, Director of the Comprehensive Epilepsy Center at NYU Langone Medical Center, for his upcoming everolimus research project. Bcureful Board members Lori Nerheim of Chicago and Laurie Marshall of New York City presented the check to Dr. Devinsky. “Now is one of the most exciting times in TSC...

2013-09-27 23:02:00

Three neuromuscular diseases are being considered for inclusion in nationwide screening. Tucson, AZ (PRWEB) September 27, 2013 Pediatrician and medical geneticist R. Rodney Howell, who chairs MDA's Board of Directors, testified Thursday before the Subcommittee on Children and Families of the U.S. Senate Committee on Health, Education, Labor & Pensions to advocate for passage of the Newborn Screening Saves Lives Reauthorization Act of 2013 (S. 1417). Howell emphasized that:...

2013-09-26 23:31:37

MarketResearchReports.Biz announces addition of new report “Orphan Drugs Market in Europe: Pricing, Reimbursement, Funding and Market Access Issues, 2013” to its database. Visit: http://www.marketresearchreports.biz/analysis-details/orphan-drugs-in-europe-pricing-reimbursement-funding-and-market-access-issues-2013-edition Albany, NY (PRWEB) September 26, 2013 The cost of treating rare diseases in an age when austerity measures are hitting a total health care funding across Europe is a...


Word of the Day
callithump
  • A somewhat riotous parade, accompanied with the blowing of tin horns, and other discordant noises; also, a burlesque serenade; a charivari.
'Callithump' is a back-formation of 'callithumpian,' a 'fanciful formation' according to the Oxford English Dictionary. However, the English Dialect Dictionary, says 'Gallithumpians' is a Dorset and Devon word from the 1790s that refers to 'a society of radical social reformers' or 'noisy disturbers of elections and meetings.'
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