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DNA data shared in ways patients may find surprising

DNA data shared in ways patients may find surprising
Tuesday, August 13, 2019
Deals between drugmakers and hospital systems to mine the genetic profiles of hospital patients are triggering concerns over the control of valuable genetic data. Drugmakers have been spending hundreds of millions of dollars for access to patient information because of the data’s potential to help unlock disease insights and discover new drugs. They are striking deals to sequence...
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Arrowhead Pharmaceuticals doses first patient in SEQUOIA Phase 2/3 Study of ARO-AAT for treatment of Alpha-1 liver disease

Thursday, August 8, 2019
Arrowhead Pharmaceuticals Inc. announced that it has dosed the first patient in SEQUOIA (AROAAT2001), a potentially pivotal Phase 2/3 clinical study of ARO-AAT, the company’s second generation subcutaneously administered RNA interference...
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CSL Behring announcement on their product Zemaira

Tuesday, August 6, 2019
Today, the Alpha-1 Foundation received the following communication from CSL Behring, regarding Zemaira®, their prescription drug for augmentation therapy for the treatment of Alpha-1 Antitrypsin Deficiency (Alpha-1). “CSL Behring...
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The 28th Annual Alpha-1 National Conference: The Alpha of Tomorrow

Tuesday, July 23, 2019
Orlando, Florida was the site of the largest gathering of Alphas, caregivers, family members, researchers, industry representatives, and the Alpha-1 community in the world, as the Alpha-1 Foundation held its 28th Annual Alpha-1 National...
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Save the date: Developing Therapeutics for Alpha-1 Antitrypsin Deficiency Workshop

Friday, July 19, 2019
The U.S. Food and Drug Administration (FDA) and the National Institutes of Health (NIH) are sponsoring the workshop entitled "Developing Therapeutics for Alpha-1 Antitrypsin Deficiency." The federal agencies will distribute a formal...
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Alpha-1 Foundation earns highest not-for-profit accreditations

Monday, July 15, 2019
The Alpha-1 Foundation earned the 2019 Platinum Seal of Transparency, the highest level of recognition offered by GuideStar, the world’s largest database and source of nonprofit information, and received a 4-star rating from Charity...
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Two years have passed since the liver transplant surgery that saved Jude Ward’s life

Thursday, July 11, 2019
Almost two years have passed since Nicole and Josef Ward’s son, Jude, had a liver transplant due to Alpha-1 Antitrypsin Deficiency (Alpha-1). You can read that story by clicking here. Most people diagnosed with Alpha-1 don’t exhibit...
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Dicerna to begin clinical development of DCR-A1AT for treatment of patients with Alpha-1-associated liver disease

Monday, July 8, 2019
Dicerna Pharmaceuticals, Inc. announced it submitted a Clinical Trial Authorization (CTA) application to the Swedish Medical Products Agency (MPA) to conduct a first-in-human Phase 1/2 study of DCR-A1AT, an investigational therapy from the...
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FDA grants fast track to Alpha-1-related liver disease drug

Friday, June 28, 2019
Arrowhead Pharmaceuticals Inc. announced that the U.S. Food and Drug Administration (FDA) has granted fast track designation to ARO-AAT, the company’s second-generation subcutaneously administered RNA interference (RNAi) therapeutic being...
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Watch the 28th Annual Alpha-1 National Conference from home

Tuesday, June 18, 2019
The Annual Alpha-1 National Conference is the largest annual gathering of Alphas, their families, leading healthcare professionals, including researchers, physicians, scientists, respiratory therapists, nurse practitioners, and industry...
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The Annual Alpha-1 National Conference: The largest gathering of Alphas

Tuesday, June 18, 2019
The city of Orlando, Florida, will be the site of the largest gathering of Alphas, caregivers, family members, researchers, industry representatives, and the Alpha-1 community at large, as the Alpha-1 Foundation holds its 28th Annual Alpha-1...
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CSL Behring initiates voluntary recall for 4 lots of Zemaira

Thursday, June 6, 2019
The Alpha-1 Foundation was informed by CSL Behring that a Voluntary Biological Product Recall is being initiated for 4 lots of Zemaira®, their prescription drug for augmentation therapy for the treatment of Alpha-1 Antitrypsin Deficiency...
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Here’s the “Scoop” on the Iowa Walk

Tuesday, June 4, 2019
Filled with families, friends, laughter and of course, ice cream, the Iowa Alpha-1 Get the Scoop Walk is one not to be missed. Like most walks, it was started with a small group, and now, 11 years later, this walk has become one of the most...
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