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UK Mother of Alpha-1 transplant patient advocates registering as organ donor

UK Mother of Alpha-1 transplant patient advocates registering as organ donor
Tuesday, July 7, 2015
The mother of a nine-year-old James Hodgson thinks of the organ donor who saved her son’s life every day. James, who lives in Wakefield, was born jaundiced with a liver that was barely functioning due to a genetic disorder called alpha 1 antitrypsin deficiency, and at the age of two he was placed on the waiting list for a transplant in 2008. Within just eight days mum Rachel Hodgson...
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Arrowhead doses first patient in Australian trial of gene-silencing drug for Alpha-1 liver disease

Thursday, July 2, 2015
Arrowhead Research Corporation (NASDAQ: ARWR), a biopharmaceutical company developing targeted RNAi therapeutics, today announced that it dosed the first patient in Part B of a Phase 1 clinical trial of ARC-AAT. ARC-AAT is Arrowhead’s...
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Alpha-1 Foundation announces funding opportunities for 2015-16 grants cycle with online application system

Wednesday, July 1, 2015
The Alpha-1 Foundation is now accepting applications for its 2015-16 grants cycle. Researchers, we hope you'll join the us in our quest to find treatments and a cure for Alpha-1 Antitrypsin Deficiency. The Foundation committed nearly $2...
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Read our updated guide for supplemental oxygen users

Wednesday, July 1, 2015
The following questions were pulled from The Supplemental Oxygen Guide, a helpful Q & A for every supplemental oxygen user created by the COPD and Alpha-1 Foundations. To read more and access the full guide, click the link below. My...
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CMS takes steps to keep healthcare premiums stable

Wednesday, July 1, 2015
Today, the Centers for Medicare & Medicaid Services (CMS) took the next steps in implementing two of the Affordable Care Act’s premium stabilization programs – risk adjustment and reinsurance – that help keep premiums...
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Alpha-1 Kids in the spotlight at National Conference

Tuesday, June 30, 2015
The Alpha-1 Foundation’s Alpha-1 Kids program, as well as children with Alpha-1, will be highlighted repeatedly during the Alpha-1 National Education Conference July 24-26 in Orange County, California. “We want to bring our Alpha-1...
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Research Registry Update summer issue tells you what's happening in Alpha-1 research, how you can sign up

Tuesday, June 30, 2015
A new issue of the Alpha-1 Foundation's Research Registry Update has been mailed out to all of the Registry's more than 4,800 members. As always, the Registry Update presents information on the current research studies being managed by the...
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Register for NORD's Annual Rare Diseases and Orphan Products Breakthrough Summit

Tuesday, June 30, 2015
It's time once again to mark your calendars for NORD's annual Rare Diseases and Orphan Products Breakthrough Summit - which will take place on October 21-22, 2015 at the Crystal Gateway Marriott - just outside of Washington, D.C. In 2014,...
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What will happen to state-run insurance exchanges?

Monday, June 29, 2015
The Supreme Court upheld a key part of the Affordable Care Act on Thursday, enabling health insurance subsidies to all qualifying Americans. The ruling firmly establishes the legality of Obamacare, but quite a few states had already moved...
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Committee recommends European Medicines Agency approve CSL's Alpha-1 augmentation therapy

Monday, June 29, 2015
A key committee has recommended that the European Medicines Agency (EMA) approve Respreeza, CSL Behring's augmentation therapy for Alpha-1 Antitrypsin Deficiency. The EMA is the European equivalent of the U.S. Food and Drug Administration...
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What does the Supreme Court decision mean for me?

Thursday, June 25, 2015
I purchased health insurance from the Health Insurance Marketplace or HealthCare.gov Great news! Your affordable quality coverage has not changed. The Supreme Court has confirmed that if you qualify, you can still get financial help to lower the...
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US Supreme Court upholds the Affordable Healthcare Act

Thursday, June 25, 2015
Washington, DC -  Obamacare has survived -- again. In a 6-3 decision, the Supreme Court saved the controversial health care law that will define President Barack Obama's administration for generations to come. The ruling holds that the...
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Baxalta welcomes Alpha-1 patients at Town Hall meeting and fundraising "Spinnathon"

Tuesday, June 23, 2015
John Walsh, co-founder and CEO of the Alpha-1 Foundation, and AlphaNet Coordinator Terry Leffler kicked off a "town hall" today  meeting today as part of the introduction of Baxalta,  a new biopharmaceutical company that is...
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