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Latest Rare diseases Stories

2014-04-23 23:09:55

Combining inspiring stories from families, advice from top scientists and industry experts, the latest scientific developments in genomics and a parent’s toolkit with best practices, this book is an invaluable resource for rare disease families. St. Louis, MO (PRWEB) April 23, 2014 To celebrate Undiagnosed Children’s Awareness Day, the Rare Genomics Institute (RGI) announces a new resource to help the more than 300 million people globally affected by rare diseases. Covering both the...

2014-04-23 12:29:20

Unique Resource Now Available for Children of a Parent Diagnosed with FTD PHILADELPHIA, April 23, 2014 /PRNewswire-USNewswire/ -- Isolation, confusion and fear characterize the experience of children in a family where mom or dad has been diagnosed with frontotemporal degeneration (FTD), a rare, young-onset dementia. A new website, www.aftdkidsandteens.org, goes live this month to provide a lifeline for children and teens in affected families....

2014-04-16 04:21:57

STOCKHOLM, April 16, 2014 /PRNewswire/ -- Wilson Therapeutics, a biopharmaceutical company, today announced that it has closed a $40 million Series B financing co-led by new investors, Abingworth LLP and MVM Life Science Partners LLP ("MVM"). The company's founding investor, HealthCap, also participated in the round. "We are pleased with this significant support from our new as well as existing investors, who represent some of the most experienced in the global life sciences...

2014-04-15 23:02:32

Transparency Market Research Report Added "Amyotrophic Lateral Sclerosis Market - Global Industry Analysis, Size, Share, Growth, Trends And Forecast, 2013 - 2019" to its database. Browse Full Report: http://www.transparencymarketresearch.com/amyotrophic-lateral-sclerosis.html. Albany, New York (PRWEB) April 15, 2014 Amyotrophic lateral sclerosis (ALS) is a neurological disease and also termed as Lou Gehrig’s disease. The disease affects the motor neurons, which control the...

2014-04-15 14:45:09

The International and American Associations for Dental Research (IADR/AADR) have published a paper titled "Rare Bone Diseases and Their Dental, Oral, and Craniofacial Manifestations." The complete review by researchers Sunday O. Akintoye, Andrea B. Burke, Alison M. Boyce, Michael Collins, Brian L. Foster, Rachel I. Gafni, Janice S. Lee, Mary Scott Ramnitz, Martha J. Somerman and J. Timothy Wright is published in the OnlineFirst portion of the IADR/AADR Journal of Dental Research (JDR)....

2014-04-07 08:29:11

STOCKHOLM and CHESTERBROOK, Pa., April 7, 2014 /PRNewswire/ -- Swedish Orphan Biovitrum AB (publ) (Sobi) and Auxilium Pharmaceuticals, Inc. (Nasdaq: AUXL) today announced that Sobi became the Market Authorisation Holder (MAH) for Xiapex® (collagenase clostridium histolyticum), in 28 EU member countries, Norway, and Iceland on April 3, 2014. Xiapex/ XIAFLEX® is a first-in-class biologic approved in the US, EU, Canada and Australia for the treatment of adult Dupuytren's contracture...

2014-04-04 23:40:53

Fundraising gala for Tuberous Sclerosis Complex (TSC) will be held at Lake Forest’s Deer Path Inn on May 15th, Global TSC Awareness Day. Lake Forest, IL (PRWEB) April 03, 2014 WISH I MAY, Bcureful’s third annual gala and wine dinner organized to raise funds in support of research and a cure for Tuberous Sclerosis Complex (TSC), a genetic disorder that effects one in 6,000 newborns, is set for Thursday, May 15 at the Deer Path Inn of Lake Forest. The wine dinner presents a menu...

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....

2014-04-01 23:23:22

Dr. Beverly Davidson Researches Novel Treatments for Neurological Diseases Philadelphia, PA (PRWEB) April 01, 2014 Beverly L. Davidson, Ph.D., a nationally prominent expert in gene therapy, is joining The Children’s Hospital of Philadelphia (CHOP) today. Dr. Davidson, who investigates gene therapy for neurodegenerative diseases, arrives from the Center for Gene Therapy at the University of Iowa. She served as associate director at that Center, as well as director of the Gene Therapy...

2014-04-01 16:25:56

EHE International Donates Window Display to Augie's Quest to Raise Awareness of ALS and Promote Participation in Funding Research for Treatments and a Cure CAMBRIDGE, Mass., April 1, 2014 /PRNewswire/ -- During the month of April, Zumba® Fitness' campaign benefiting Augie's Quest, "Together We Dance(TM) to Cure ALS," will be featured in a window display in Rockefeller Center. Augie's Quest is a fundraising initiative that supports the nonprofit, ALS Therapy Development Institute...


Word of the Day
negawatt
  • A unit of saved energy.
Coined by Amory Lovins, chairman of the Rocky Mountain Institute as a contraction of negative watt on the model of similar compounds like megawatt.