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Alpha-1 Foundation earns highest not-for-profit accreditations

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 Navigator, the largest charity evaluator in the U.S., for the ninth consecutive year. By sharing metrics that highlight the progress that the Alpha-1...
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New advances in gene therapies for rare diseases

Friday, August 31, 2018
The U.S. Food and Drug Administration (FDA) recently approved Onpattro (patisiran) infusion for the treatment of peripheral nerve disease (polyneuropathy) caused by hereditary transthyretin-mediated amyloidosis (hATTR) in adult patients. This...
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Alpha-1 Foundation leadership transition

Wednesday, August 22, 2018
The Alpha-1 Foundation Board of Directors is pleased to announce that Miriam O’Day has been named as interim CEO of the Alpha-1 Foundation. Ms. O’Day has served the Foundation with distinction for nearly twenty years. The Board is...
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Alpha-1 Foundation earns 8th consecutive 4-star rating from Charity Navigator

Wednesday, August 22, 2018
The Alpha-1 Foundation has earned its eighth consecutive 4-star rating from Charity Navigator, an accomplishment that only select charities achieve in the U.S. The Foundation earned its top score based on Charity Navigator’s evaluation of...
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Orphan Drug Designation granted to Bronchiolitis Obliterans treatment

Friday, August 17, 2018
Onspira Therapeutics announced that the U.S. Food and Drug Administration (FDA) granted Orphan Drug Designation to its investigational product, OSP-101, for the treatment of Bronchiolitis Obliterans (BO). BO is a progressive inflammatory condition...
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Family of liver donor meets transplant recipient

Friday, August 10, 2018
On June 19, Cletus Schnieders was eating dinner with his wife Carrie and their three children (sons Trenton, 9, and Cletie, 4, and daughter Samantha, 2) in their Cincinnati home when he started to choke. Photo: Facebook/Carrie...
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Living donor saved her own son’s life

Tuesday, July 31, 2018
Dara Kass is an emergency physician in New York, but she did not need to be a doctor to know that something was going on with the third child, Sammy. At birth, the baby was smaller than his two siblings. He barely grew and was lethargic; his skin...
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The Assistance Fund opens new program for Alphas

Monday, July 30, 2018
The Assistance Fund, an independent charitable patient assistance foundation that helps patients and families facing high medical out-of-pocket costs, announced the launch of a new program for individuals with Alpha-1 Antitrypsin Deficiency...
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Alpha-1 Foundation board has new Chair

Friday, July 27, 2018
The Alpha-1 Foundation has the honor to announce that Jeanine D’Armiento, MD, PhD, has been named as the newest Chair of its board of directors. D’Armiento has served on the Foundation’s board since 2011, and before that, she had...
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FDA warns of imposters sending consumers fake warning letters

Thursday, July 19, 2018
The U.S. Food and Drug Administration (FDA) is warning consumers about criminals forging FDA warning letters to target individuals who tried to purchase medicines online or over the phone. Based on the agency’s experience with criminals...
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Inhaled alpha-1 antitrypsin: Kamada receives positive advice on new Phase 3 study design

Tuesday, July 17, 2018
Kamada Ltd., a plasma-derived protein therapeutics company, announced that it has received positive scientific advice from the Committee for Medicinal Products for Human Use (CHMP) of the European Medicines Agency (EMA), related to the development...
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FDA announces recall of several medicines containing valsartan

Monday, July 16, 2018
The U.S. Food and Drug Administration (FDA) is alerting healthcare professionals and patients of a voluntary recall of several drug products containing the active ingredient valsartan, used to treat high blood pressure and heart failure. This...
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New working group for patient advocacy is created

Monday, July 16, 2018
The Food and Drug Administration (FDA) and the Clinical Trials Transformation Initiative (CTTI) announced newly selected representatives for the Patient Engagement Collaborative (PEC), a joint endeavor originally disclosed in December 2017 to...
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