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Latest Rare diseases Stories

2014-06-05 23:16:18

New officers focused on uniting the multiple system atrophy community to defeat the rare and terminal, neurodegenerative disorder. Expansion of the Board of Directors will be announced soon as important work continues. Charlotte, NC (PRWEB) June 05, 2014 The Multiple System Atrophy Coalition has elected new officers of its board of directors during their annual general meeting. Incorporated in 1999, The Multiple System Atrophy Coalition is a growing nonprofit 501 (c) 3 organization...

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...

2014-06-03 08:31:40

LEXINGTON, Mass., June 3, 2014 /PRNewswire/ -- Synageva BioPharma Corp. (Synageva) (NASDAQ: GEVA), a biopharmaceutical company developing therapeutic products for rare diseases, today announced data presentations and a company-sponsored satellite symposium at the European Atherosclerosis Society (EAS) Congress being held May 31-June 3, 2014 in Madrid, Spain. Logo - http://photos.prnewswire.com/prnh/20140522/90728 Sebelipase alfa continues to improve disease-related abnormalities...

2014-06-02 08:31:12

Staff expanded in preparation for initiation of pulmonary and ophthalmic clinical trials DURHAM, N.C., June 2, 2014 /PRNewswire/ -- Parion Sciences, a company dedicated to the development of novel treatments for pulmonary and ocular diseases, today announced senior leadership and organizational changes. The changes include the following: -- Paul Boucher has been promoted to President and will lead the executive management team, business development and provide overall...

2014-05-29 23:09:19

Couple Builds upon Success of Last Year’s Event to Raise Awareness of Little-Known Disease at Lakeside Michigan Event Gull Lake, MI (PRWEB) May 29, 2014 After last year’s wildly successful event, Michelle Mackay, wife of retired Kellogg’s CEO David Mackay, and her family will host the second annual festive event to raise awareness and funds for the FSH Society on Saturday, July 5 at their lakeside home in Gull Lake, Michigan. Always an active member of her community, Michelle has...

2014-05-20 16:24:13

Focused Rowing Efforts & New Film Support Crucial ALS Research CHONSHOHOKEN, Pa., May 20, 2014 /PRNewswire/ -- For the next six months, Philadelphia will play host to another revolution, when the city's rowers come out in force to benefit Project A.L.S. Led by Carol Kleiner, a Philadelphia area native who was diagnosed with ALS, also known as Lou Gehrig's disease, the newly formed Carol's Crew will raise awareness and significant support for stem cell research, drug screening, and...

2014-05-16 08:26:28

- Data Demonstrate Positive Trends in Lung Function and Pulmonary Exacerbations - SOUTH PLAINFIELD, N.J., May 16, 2014 /PRNewswire/ -- PTC Therapeutics, Inc. (NASDAQ: PTCT) today announced that the results of a Phase 3 study of ataluren in patients with nonsense mutation cystic fibrosis (nmCF) were published in Lancet Respiratory Medicine. The results demonstrated positive trends in both the primary endpoint, lung function as measured by relative change in % predicted FEV(1) (forced...

2014-05-15 12:35:07

TORONTO, May 15, 2014 /CNW/ - The month of May is tuberous sclerosis complex (TSC) awareness month in Canada, and May 15(th) is TSC Global Awareness Day. During this time, the goal is to increase public awareness about this genetic disorder that causes tumours to form in vital organs, primarily in the brain, eyes, heart, kidneys, skin and lungs. It is also the leading genetic cause of both autism and epilepsy. 1 in 6000 children are born with TSC. Early detection and treatment is...

2014-05-15 08:33:43

Research initiative focused on developing improved treatments for tuberous sclerosis complex patients brings hope on TSC Awareness Day GRAND RAPIDS, Mich., May 15, 2014 /PRNewswire/ -- May 15(th) is Tuberous Sclerosis Complex Awareness Day, and in 2013 Van Andel Research Institute (VARI) launched the Pathway of Hope research initiative under the direction of Dr. Jeffrey MacKeigan, Associate Professor and Head of the Institute's Laboratory of Systems Biology. The initiative involves...

2014-05-14 00:21:38

SILVER SPRING, Md., May 14, 2014 /PRNewswire-USNewswire/ -- On May 15, the Tuberous Sclerosis Alliance (TS Alliance) will join tuberous sclerosis complex (TSC) organizations around the world to observe the third annual TSC Global Awareness Day. On this day, thousands of individuals and families affected by TSC will join together to increase public awareness of the rare disease and share their stories of hope for the future. This year's TSC Global Awareness Day will feature a social...


Word of the Day
siliqua
  • A Roman unit of weight, 1⁄1728 of a pound.
  • A weight of four grains used in weighing gold and precious stones; a carat.
  • In anatomy, a formation suggesting a husk or pod.
  • The lowest unit in the Roman coinage, the twenty-fourth part of a solidus.
  • A coin of base silver of the Gothic and Lombard kings of Italy.
'Siliqua' comes from a Latin word meaning 'a pod.'
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