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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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NORD releases principles to lower the cost of prescription drugs

Wednesday, May 8, 2019
The National Organization for Rare Disorders (NORD), which represents the 25-30 million Americans living with rare disorders, including Alpha-1 Antitrypsin Deficiency (Alpha-1), announced its development of key drug pricing principles,...
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Alpha-1 Foundation attends Coalition of Patient Advocacy Groups (CPAG) Meeting

Tuesday, May 7, 2019
The Alpha-1 community was well represented as the Alpha-1 Foundation attended the Coalition of Patient Advocacy Groups (CPAG) Meeting, in Rockville, MD, on April 30, 2019. Photo (left to right): Jamie Sullivan, COPD Foundation; David Fernandez,...
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FDA approves new, larger vial sizes for Alpha-1 augmentation therapy

Thursday, April 25, 2019
The U.S. Food and Drug Administration (FDA) has approved single-vial dosing (4-gram and 5-gram vial sizes) for ZEMAIRA® [Alpha1-Proteinase Inhibitor] for augmentation therapy, the current treatment for Alpha-1 Antitrypsin Deficiency (Alpha-1)...
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Alpha-1 Foundation co-sponsors congressional reception for the NHLBI Division of Lung Diseases

Wednesday, April 17, 2019
On April 9, 2019, the Alpha-1 Foundation was proud to be a co-sponsor of the congressional reception to celebrate the 50th anniversary of the Division of Lung Diseases of the National Heart, Lung and Blood Institute (NHLBI), an institute of the...
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Moderated discussion: “Advancing the innovation ecosystem: Working together for patients,” in Washington, DC

Thursday, April 11, 2019
On April 3, 2019, Francis Collins, MD, PhD, director of the National Institutes of Health (NIH), Mikael Dolsten, MD, PhD, chief scientific officer and president, Worldwide Research, Development and Medical, Pfizer, joined in a discussion led by...
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International Research Conference on Alpha-1 Antitrypsin & Alpha-1 Global Patient Congress kick-off

Wednesday, April 3, 2019
Alphas, physicians, and researchers are joining together in Dubrovnik, Croatia to begin the highly anticipated 4th International Research Conference on Alpha-1 Antitrypsin and 7th Alpha-1 Global Patient Congress. With a rich history of...
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Alpha Jonathan Maidment goes back to the Pacific Crest Trail

Monday, April 1, 2019
Determined, driven, ready, and focused are some of the words that best describe Jonathan Maidment, 24, an Alpha from Connecticut who is passionate about hiking and helping the Alpha-1 community.  Jonathan is ready and looking forward to...
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Board of Directors: New appointments to the Executive Committee

Tuesday, March 19, 2019
At their February 2019 meeting, the Alpha-1 Foundation Board of Directors appointed three members to new positions on the Executive Committee: Image: Elizabeth Johnson (left), Fred Walsh (center), Jennifer Jopp (right) Elizabeth Johnson was...
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The Celtic Connection 2019: The pot of gold at the end of the rainbow

Sunday, March 17, 2019
The 2019 Celtic Connection, an annual Building Friends for a Cure event held in Boston, Massachusetts, joined 385 guests for a great night to raise awareness and over $138,000 for Alpha-1 Antitrypsin Deficiency (Alpha-1) research and related...
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FDA to host public meeting on: “Patient Perspectives on the Impact of Rare Diseases,” in April

Wednesday, March 6, 2019
The U.S. Food and Drug Administration (FDA) announced a public meeting and an opportunity for public comment on “Patient Perspectives on the Impact of Rare Diseases: Bridging the Commonalities,” on April 29, 2019. This public...
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The energy from Rare Disease Day continues

Tuesday, March 5, 2019
On February 28th, 2019, the Alpha-1 Foundation proudly wore its stripes to support the National Institutes of Health (NIH) sponsored Rare Disease Day (RDD) along with patient organizations, politicians, caregivers, medical professionals,...
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Florida couple raising awareness for rare disease

Wednesday, February 27, 2019
Walking from his front door to the driveway’s end can leave Doug Peters gasping for air. Four years ago, he was diagnosed with Alpha-1 Antitrypsin Deficiency (Alpha-1). “It was a tough reality when they explained to us why he has...
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