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Foundation presents achievement awards, announces $323,000 challenge grant from Sisson Charitable Trust

Foundation presents achievement awards, announces $323,000 challenge grant from Sisson Charitable Trust
Sunday, July 26, 2015
Achievement and leadership awards and the announcement of a matching grant of $323,000 from the Sisson Charitable Trust highlighted Saturday night, the final night of the 24th annual Alpha-1 Education Conference. Mary Lyle and her family join John Walsh onstage Saturday night after his announcement of the $323,000 matching grant donation from the Harry Sisson Charitable Trust. Walsh presented...
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"Never doubt the power of one," says our longtime Woman in Washington; "Make your mark on Alpha-1 history," says Walsh

Saturday, July 25, 2015
Miriam O'Day, a consultant for the National Organization for Rare Disorders and for many years the Senior Director, Public Policy, for the Alpha-1 Foundation, gave the keynote talk Saturday morning at the 24th annual National Education Conference...
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Building Friends for a Cure honors community fundraisers; BFC program has raised more than $5 million over 10 years

Saturday, July 25, 2015
In the 20th anniversary year of the Alpha-1 Foundation, the Foundation's Building Friends for a Cure (BFC) program marked its own 10th anniversary and a total of more than $5 million raised in community fundraising events over the decade, during...
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2015 Alpha-1 National Conference opens with inspirational Appalachian Trail story, meetings with experts and session on community engagement

Friday, July 24, 2015
The 24th annual National Education Conference of the Alpha-1 community officially began Friday afternoon with a two-hour "Meet the Experts" session at which Alphas were offered the chance to ask questions about both the lung and liver diseases of...
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Remembering Medicare, Medicaid history on 50th anniversary

Thursday, July 23, 2015
Half a century after President Lyndon Johnson signed legislation creating Medicare and Medicaid with a pledge that seniors no longer would “be denied the healing miracle of modern medicine,” the promise has been largely fulfilled. The...
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FDA releases final drug shortage notification rule requiring advance notice of possible drug shortages, including biologic drugs

Thursday, July 23, 2015
The Food and Drug Administration (FDA) released a final rule July 8, 2015 on “Permanent Discontinuance or Interruption in Manufacturing of Certain Drug or Biological Products,” which sets new rules to address drug...
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Alnylam begins clinical trial in UK of potential Alpha-1 liver therapy

Thursday, July 23, 2015
Alnylam Pharmaceuticals, Inc. (Nasdaq: ALNY), a leading RNAi therapeutics company, announced today that it has initiated a Phase 1/2 clinical trial with ALN-AAT, a subcutaneously administered investigational RNAi therapeutic targeting alpha-1...
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Parents of school-aged children with rare conditions: learn how to advocate for their educational, social needs at school

Thursday, July 23, 2015
Global Genes, a rare disease patient advocacy organization, is hosting a webinar for the parents/caregivers of school-aged children with rare conditions. The focus is to arm caregivers with the tools and knowledge to better advocate for their...
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Global Genes event to honor Jonathan Maidment, Appalachian Trail hiker, Alpha-1 advocate

Wednesday, July 22, 2015
Global Genes, a rare disease advocacy organization, will be hosting their 4th annual "Rare Tribute to Champions of Hope" event in Huntington Beach, CA. This year, Alpha Jonathan Maidment, who hiked the entire 2,200-mile Appalachian trail in...
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More than 500 attend Alpha-1 National Conference. Can't make it? Watch Saturday events live online

Tuesday, July 21, 2015
GARDEN GROVE, California – At 55, Bill Libby of San Diego, CA, thought of himself as a healthy man. There was only this stubborn chest cold that had lasted for months. His primary care doctor ordered an X-ray, just as a precaution. The...
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Americans with Disabilities Act celebrates 25th anniversary

Monday, July 20, 2015
This year on July 26, the Americans with Disabilities Act (ADA) will celebrate its 25th anniversary. Signed into law by President George H.W. Bush in 1990, the ADA both prohibits discrimination on the basis of disability and guarantees equal...
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New NIH body calculator helps you lose or gain weight

Monday, July 20, 2015
Forget the number 2,000—a new government calculator uses the latest research to spit out an exact calorie count and exercise regimen you’ll need to hit your weight loss goals. The calculator, called the Body Weight Planner, is...
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Medicare to test program that allows patients to use hospice services while still getting curative treatments

Monday, July 20, 2015
Terminally ill patients no longer will have to give up curative treatment to receive Medicare-paid hospice care, under a limited new program the CMS will start testing with 140 hospice providers as early as January. The Medicare Care Choices...
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