News Archive

More than 10 million people have become insured under Obamacare, new study shows

A day after a court decision that could threaten a crucial component of Obamacare, the federal government said Wednesday that 10.3 million adults have become newly insured by the close of open enrollment in the new type of health  read more…

NACE offers Alpha-1 online course for healthcare providers in convenient ‘spaced learning’ format

The National Association for Continuing Education (NACE) is offering a course for healthcare providers on Alpha-1 as part of its “Spaced Education” continuing medical education mobile series.

The course, Alpha-1 Antitrypsin Deficiency (AAT): 50 Years of Progress-Rapid Fire! A Spaced Learning  read more…

In high-risk area, Pennsylvania doctor offers free Alpha-1 testing

Within a few weeks of first offering a free blood test to his patients, Benjamin Laracuente, MD, identified numerous people with Alpha-1, a hereditary condition that can lead to lung and liver diseases.

And given the area’s  read more…

Consumer guide to conflicting court rulings on healthcare law

On Tuesday two U.S. appeals courts issued conflicting rulings on a subject that’s important to millions of people:  the availability of subsidies to help purchase coverage under the health-care law.  Kaiser Health News reporter Mary Agnes Carey answers some frequently asked  read more…

Alpha-1 Canada urges action against Ontario bill banning plasma donor payment

A story published in the Toronto Star’s July 22 edition outlines the Ontario government’s plan to re-introduce legislation to ban paid plasma donations.

The bill, introduced earlier this year, died when an election was called.

Health Minister  read more…

Team Alpha-1 brings home 5 medals and a message: ‘Be a voice for organ donation’

Team Alpha-1 took home a pretty good haul from last week’s Transplant Games of America: two gold medals, a silver, two bronze, and enough inspirational stories to last until 2016, when the Games are in Cleveland.

Joanne Mellady, attending for the first  read more…

Alaska community holds fundraiser to help former DJ get home, closer to lung transplant

After lending her support to dozens of community fundraisers over the years, it’s former on-air radio personality Becky Nichols’ turn to be on the receiving end of that generosity.

Nichols, originally from Maine, has lived in Anchorage,  read more…

For 6th Paul Healy Memorial Golf Tournament on Aug. 11, family hopes it’s another ‘perfect day’

On Aug. 11, Bob, Pattie and James Healy and Mary Healy Goodwin will celebrate their brother, Paul, by doing what he loved most: playing golf.

The 6th annual Paul Healy Memorial Golf Tournament will be held at the Halifax Country Club in Halifax,  read more…

Alpha-1 clinical resource centers get top specialty ranking in ‘U.S. News’ annual hospitals report

U.S. News & World Report has released its annual rankings of the best hospitals for 2014, and Alpha-1 Foundation Clinical Resource Centers scored high.

The report looked at data for nearly 5,000 hospitals and results from surveys of more than 9,500 physicians to  read more…

Global Genes to hold Rare Patient Advocacy Summit Sept. 11-12 in Huntington Beach, CA

The Global Genes Project’s 3rd Annual RARE Patient Advocacy Summit will be held Sept. 11-12 at the Hyatt Regency Resort & Spa in Huntington Beach, CA.

It’s a chance to learn all about being a patient advocate, proactive and productive in efforts to  read more…

Lung experts issue statement on
e-cigarettes, urging restrictions until further research done

Experts from the world’s leading lung organizations have released “Electronic Cigarettes: A Position Statement of the Forum of International Respiratory Societies,” published online in the American Journal of Respiratory and Critical Care Medicine on July 9.

The statement focuses  read more…

Alpha-1 Foundation clinical resource center to hold pulmonary symposium
Sept. 13 in Pasadena, CA

The pulmonary division of University of Southern California’s Keck School of Medicine, one of the Alpha-1 Foundation’s 84 Clinical Resource Centers, is sponsoring a pulmonary symposium, “2014 State of the Art,” on Saturday, Sept. 13 in Pasadena, CA.

The program,  read more…

Thanks to a friend, Maine Alpha, 10, will get life-saving liver transplant

A 10-year-old girl from Waterboro, Maine, found out on Monday she will get the gift that will save her life.

Camryn Richards, who was recently featured in a story on ABC affiliate WMTW-Channel 8, has Alpha-1 liver disease, was  read more…

The Alpha-1 Foundation announces
2014-15 grant funding opportunities

Members of the medical, research and scientific communities are invited bring the cure for Alpha-1 Antitrypsin Deficiency within reach by participating in the Alpha-1 Foundation’s research programs.

Get complete information about our research opportunities, application deadlines, application forms and letter of  read more…

Kaiser report calls Obamacare outreach effort ‘impressive’ in first enrollment period

More than 4,400 consumer assistance programs created under the Affordable Care Act helped an estimated 10.6 million people explore their new health insurance options and apply for coverage during the initial six-month enrollment period, according  read more…

In first meeting, PCORI’s new Advisory Panel on Rare Disease sets priorities

The new Advisory Panel on Rare Disease of the Patient-Centered Outcomes Research Institute (PCORI) held its first meeting on April 30 to establish its agenda.

The 13-member panel, chaired by Marshall Summar, MD, is charged with helping PCORI decide how to best manage its  read more…

After Miss Florida USA pageant, Nicole Perlstein is continuing Alpha-1 awareness efforts

After months of preparing for the Miss Florida USA pageant, “it’s back to work and time to take off the platform heels,” Nicole Perlstein says cheerfully.

Perlstein, who was crowned Miss Vero Beach USA in March, did not win  read more…

Patient voice vital in drug development, NORD’s Summar tells House panel

Marshall Summar, MD, board member and scientific adviser for the National Organization for Rare Disorders (NORD), underscored the importance of the patient voice in the drug discovery and development process in testimony Friday at a House Energy & Commerce  read more…

For Team Alpha-1, competing
in Transplant Games is one more
reason to be grateful

In two days, the four members of Team Alpha-1 will be heading to Houston, Texas, where they will compete in the 2014 Transplant Games of America, July 11-15.

They’re coming from the North, South, West and Midwest, but they all share  read more…

Read Alpha-1/COPD Foundation president’s ‘Voice of the Patient’ column in Journal of Thoracic Disease

Since August 2012, the Journal of Thoracic Disease has been collaborating with the International COPD Coalition (ICC) in publishing a regular column with input from chronic obstructive pulmonary disease (COPD) patient organizations, lung physicians and other COPD experts worldwide.

A June 11  read more…