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Pope calls for "empathy" in treating people with rare diseases

Pope calls for "empathy" in treating people with rare diseases
Tuesday, May 3, 2016
Pope Francis told participants in a Vatican health summit on Friday that a renewed sense of empathy should fuel their work and research, particularly regarding treatment for people who have rare diseases. Pope Francis “It is fundamentally important that we promote greater empathy in society, and not remain indifferent to our neighbor’s cry for help, including when he or she is...
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ATS conference to feature Alpha-1 Q&A session

Friday, April 29, 2016
Two prominent Alpha-1 experts will discuss chronic obstructive pulmonary disease (COPD) at the American Thoracic Society’s annual conference, which will take place May 13-18, 2016 in San Francisco. Robert Sandhaus, MD, PhD Robert Sandhaus,...
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Alphas face loss of PSI assistance with healthcare copays and premiums

Wednesday, April 27, 2016
More than 50 Alphas have lost or are at immediate risk of losing their Patient Services, Inc., (PSI)  copay assistance because a claim has not been posted to their account within the last four months.  PSI is a not-for-profit...
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New York transplant system is broken, husband of deceased Alpha says

Wednesday, April 27, 2016
The husband of an Alpha who died while waiting for a liver transplant in a New York hospital recounts the ordeal in a blog that appeared in The Huffington Post. Earlier this year, my wife died awaiting a liver transplant at New...
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Nurse practitioners raise awareness of Alpha-1

Friday, April 22, 2016
Carla Ladig suffered from shortness of breath, bronchitis and other lung problems for 17 years, but did not know the cause. Dawn Dunn Two and a half years ago, her symptoms became so severe that she was admitted to the intensive care unit at...
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Celebration of Life will tee off May 1, 2 on Miami Beach

Thursday, April 21, 2016
On Sunday, May 1 and Monday, May 2, the Alpha-1 Foundation will welcome friends, family, physicians, researchers and industry partners to the 16th annual Celebration of Life, the Foundation’s annual signature fundraising event. The...
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Growing scarcity of liquid oxygen endangers patients, advocates say

Thursday, April 21, 2016
Alphas and others with severe breathing problems who require high-flow oxygen are increasingly finding it difficult to obtain liquid oxygen, effectively making them homebound, forcing them to carry heavy compressed oxygen tanks around with them,...
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Kevin Shroyer, father of Alpha lung donor, completes Boston Marathon

Wednesday, April 20, 2016
Kevin Shroyer, the father of a 14-year-old girl whose donated lungs saved an Alpha’s life, completed the Boston Marathon on Monday, April 18 in her honor. Kevin Shroyer Although the experienced distance runner was happy to cross the finish...
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Vlady Rozenbaum, founder of COPD-Alert, passes away

Friday, April 15, 2016
Vlady Rozenbaum, PhD, a beloved advocate and educator who dedicated his life to people who suffer from chronic obstructive pulmonary disease (COPD), died on Oct. 17, 2015.  Vlady Rozenbaum, PhD The founder of COPD-Alert, a comprehensive...
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The Alpha-1 Project extends funding for NIH-NCATS fellowship for a third year

Wednesday, April 13, 2016
The Alpha-1 Project has announced that it will extend funding for the postdoctoral fellowship at the National Institutes of Health’s (NIH) National Center for Advancing Translational Sciences (NCATS) for a third year. The extension follows...
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Dire warnings of ObamaCare price spikes wrong, HHS report says

Wednesday, April 13, 2016
A new report from the Obama administration finds that ObamaCare premiums rose 8 percent last year, pushing back on warnings of larger price hikes.  The Department of Health and Human Services (HHS) report released Tuesday finds that...
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Father of Alpha lung donor runs Boston Marathon in her honor

Tuesday, April 12, 2016
Kevin Shroyer has been running around almost his entire life. As a boy, he ran for touchdowns on the football field, then up and down the basketball court and around the baseball diamond. Kevin Shroyer In the 1990s, as a young man, he decided to...
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Elsa Anders, former Virginia Alpha-1 support group leader, passes away

Tuesday, April 12, 2016
Elsa Ragnhilde Ruth Anders, a former Alpha-1 support group leader in Virginia, passed away on April 5, 2016. Anders, of Purcellville, VA, was socially and environmentally conscious, and always wanted to help others in need. She was particularly...
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