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Latest Rare diseases Stories

2014-08-13 12:29:02

New White Paper also Available on Disease that is a Leading Cause of Young-Onset Dementia RADNOR, Pa., Aug. 13, 2014 /PRNewswire-USNewswire/ -- Frontotemporal degeneration (FTD), a disease process that results in progressive damage to the temporal and/or frontal lobes of the brain, has been formally included in national research priorities to cure Alzheimer's disease and other dementias by 2025, the Association of Frontotemporal Degeneration (AFTD) announced today....

2014-08-13 12:28:49

Donations Exceed Expectations with $5.7 Million since July 29 WASHINGTON, Aug. 13, 2014 /PRNewswire-USNewswire/ -- In the last two weeks, the Ice Bucket Challenge has quite literally "soaked" the nation. Everyone from Ethel Kennedy to Justin Timberlake has poured a bucket of ice water over her or his head and has challenged others do the same or to make a donation to fight ALS within twenty-four hours. http://photos.prnewswire.com/prnvar/20131211/MM32178LOGO Between July 29 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,...

2014-08-11 20:24:21

LONDON, Aug. 11, 2014 /PRNewswire/ -- Reportbuyer.com has added a new market research report:Lysosomal Storage Disorder-Pipeline Insights, 2014https://www.reportbuyer.com/product/2278642/-Lysosomal-Storage-Disorder-Pipeline-Insights-2014.htmlSUMMARYDelveInsight's," Lysosomal Storage Disorder-Pipeline Insights, 2014", report provides comprehensive insights about pipeline drugs across this indication. A key objective of the report is to establish the understanding for all the pipeline...

2014-08-11 16:27:52

LYNBROOK, N.Y., Aug. 11, 2014 /PRNewswire/ -- BioSpecifics Technologies Corp. (NASDAQ: BSTC), a biopharmaceutical company developing first in class collagenase-based products marketed as XIAFLEX(®) (collagenase clostridium histolyticum or CCH) in the U.S. and XIAPEX(®) in the EU, today announced its financial results for the second quarter ended June 30, 2014 and provided a corporate update. "This was a momentous quarter of milestones for XIAFLEX both commercially and clinically. We saw...

2014-08-11 12:28:11

WASHINGTON, Aug. 11, 2014 /PRNewswire-USNewswire/ -- The ALS Association announced today that it has awarded 21 new research grants totaling nearly $3.5 million to find treatments and a cure for amyotrophic lateral sclerosis (ALS). The grants were awarded to scientists from laboratories located in nine different states in the United States as well as from the United Kingdom, France, Canada, Switzerland, Israel and Australia. http://photos.prnewswire.com/prnvar/20131211/MM32178LOGO...

2014-08-09 23:04:05

Emily Gimble's new single, “Mighty Like a Rose,” is available for download through many online music distributors. Austin, Texas (PRWEB) August 09, 2014 Pianist, vocalist and newest member of Asleep at the Wheel, Emily Gimble has a brand new single, “Mighty Like a Rose,” currently available for downloads on the web at CD Baby.com, iTunes, Amazon and other online distributors. All proceeds benefit Beyond Batten Disease Foundation (BBDF), a nonprofit organization established to...

2014-08-07 23:12:05

Tom Looney, diagnosed with MSA in 2008, worked closely with tech industry icons, including Steve Jobs. His unique experiences and talents will now be utilized to represent patients and increase awareness for this rare and terminal neurological disorder. Wilmington, NC (PRWEB) August 07, 2014 The Multiple System Atrophy (MSA) Coalition, an organization dedicated to serving patients, caregivers and families touched by MSA, has announced the appointment of veteran tech industry exec Tom...

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 12:31:36

A nine-year study recently released proves the need TOWSON, Md., Aug. 5, 2014 /PRNewswire/ -- The Immune Deficiency Foundation (IDF) commends the states of Maine and Rhode Island for adding Severe Combined Immune Deficiency (SCID) to their states' newborn screening panels, effective August 1, 2014. These states join 21 other states currently screening newborns for SCID, ensuring over two thirds of all babies in the U.S. are now being screened. SCID is a type of primary...


Word of the Day
malpais
  • The ragged surface of a lava-flow.
'Malpais' translates from Spanish as 'bad land.'