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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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Jonathan Maidment’s journey continues to develop

Tuesday, July 10, 2018
Jonathan Maidment, the 23-year old Alpha who undertook the challenge of doing a hike-thru of the entire 2,600-mile Pacific Coast Trail (PCT), from Southern California to the border between Washington state and Canada, interrupted his journey for...
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CRISPR gene editing may correct Alpha-1 but perhaps it is too soon

Friday, July 6, 2018
Groundbreaking research shows that CRISPR-Cas9 genome editing technology can correct the gene mutation responsible for Alpha-1 Antitrypsin Deficiency (Alpha-1), by successfully making a targeted gene correction in the livers of affected mice that...
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Tips for enjoying fireworks while living with Alpha-1 lung disease

Tuesday, July 3, 2018
Holidays are happy occasions, filled with celebrations with family and friends. The 4th of July usually includes barbecues, pool parties or beach trips. But if you or a loved one has Alpha-1, holidays can be daunting. The change of routine, the...
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The 27th National Education Conference opens with a panel on the latest Alpha-1 findings

Friday, June 29, 2018
The 27th Annual Alpha-1 National Education Conference, organized by the Alpha-1 Foundation in San Francisco, California, will open this Friday, June 29th with a panel discussion about the latest therapies and tools in Alpha-1. The session will be...
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The 27th Annual National Education Conference will be streaming online

Thursday, June 28, 2018
The 27th Annual Alpha-1 National Education Conference is the largest annual gathering of Alphas, their families, leading healthcare professionals and industry in the world. It is a three-day event with educational programs given by national...
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Margaret Anderson will deliver keynote speech at the Alpha-1 Annual National Education Conference in San Francisco

Monday, June 25, 2018
Margaret Anderson, managing director of Deloitte Consulting LLP, will be the keynote speaker at the Alpha-1 Foundation’s 27th Annual National Education Conference on Saturday, June 29th at the Hyatt Regency San Francisco Airport in San...
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Partnership aims at improving donor lung transplant

Wednesday, June 20, 2018
Paragonix Technologies, Inc. entered into a partnership with the Lung Transplant Foundation to support the company’s further development and subsequent commercialization of Paragonix SherpaLung™, a donor lung transport device for...
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Arrowhead completes enrollment in Phase 1 study for treatment of Alpha-1 liver disease

Tuesday, June 19, 2018
Arrowhead Pharmaceuticals, Inc. announced that it has completed enrollment of a Phase 1 clinical trial of ARO-AAT, their second generation subcutaneously administered RNA interference (RNAi) therapeutic that is being developed as a treatment for...
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Alphas will hold one of their biggest meetings in San Francisco

Monday, June 18, 2018
The city of San Francisco, California, will be the site of one of the biggest gatherings of Alphas, when the Alpha-1 Foundation holds, between June 29 – July 1, 2018, its 27th Annual National Education Conference. Alphas – as those...
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New foundation will increase awareness about cell and gene therapy, but caution is recommended

Thursday, June 7, 2018
The Alliance for Regenerative Medicine (ARM) announced the launch of the ARM Foundation for Cell and Gene Medicine, which will be dedicated to increasing public awareness and understanding of the clinical and societal benefits of cell and gene...
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NORD opposes implementation of copay accumulator programs in health plans

Tuesday, June 5, 2018
The National Organization for Rare Disorders (NORD), the nonprofit institution that represents 30 million Americans that suffer from rare diseases, issued the following statement on the increasing use of copay accumulator programs in health...
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RNA interference therapies could be on the verge of success

Tuesday, May 29, 2018
In the mid-2000s there was a wave of excitement across the pharmaceutical industry: a new discovery about cells that had the potential to transform medicine.  “The world became enamored with this idea because it was very powerful. If...
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