Menu

Top Stories

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...
Divider

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...
Divider

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...
Divider

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,...
Divider

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...
Divider

The Alpha-1 Foundation gears up for the 2019 Global meetings in Dubrovnik, Croatia

Tuesday, February 26, 2019
MIAMI, Feb. 26th, 2019 - The 7th Alpha-1 Global Patient Congress and 4th International Research Conference on Alpha-1 Antitrypsin will be held April 3-6, at the Sheraton Dubrovnik Riviera Hotel in Dubrovnik, Croatia. Patient leaders, physicians...
Divider

The Johnsons are ready to party for a cure… ‘80s style!

Friday, February 15, 2019
Richard and Sarah Johnson of St. Johns, Florida, have not stop believing in the mission of the Alpha-1 Foundation. Eleven years ago, when their son Lucas and daughter Grace were diagnosed with Alpha-1 Antitrypsin Deficiency (Alpha-1) they made a...
Divider

Alpha-1 Foundation expresses gratitude to plasma donors

Wednesday, February 13, 2019
Recently, the New York Times published an article that, in the opinion of the Alpha-1 Foundation, portrayed an image of plasma donors that only focused on one side of the story.  Plasma donors can come from all backgrounds and levels of...
Divider

NORD continues to bridge the gap between patients and their health care

Thursday, February 7, 2019
Since its inception in the early 1980s, the National Organization for Rare Disorders (NORD) has been instrumental in providing assistance to individuals affected by rare diseases and their families; it was influential in the Orphan Drug Act of...
Divider

Alpha-1 Foundation welcomes new President and CEO

Monday, February 4, 2019
The Alpha-1 Foundation Board of Directors is excited to announce the appointment of Miriam O’Day as the new president and chief executive officer (CEO) of the Alpha-1 Foundation. “We thank Miriam for serving as interim CEO, since...
Divider

Tips and resources for Alphas and the cold weather

Wednesday, January 30, 2019
Cold weather conditions can worsen symptoms for lung affected Alphas and for patients with Chronic Obstructive Pulmonary Disease (COPD), as low temperatures can often lead to fatigue and windy days can cause shortness of breath. Also, the dry...
Divider

Alpha friend and leader Jim Quill passes away

Monday, January 14, 2019
It is with a heavy heart that the Alpha-1 Foundation shares the passing of a dear friend and leader, James Quill on Sunday, January 13th, 2019 in Bluffton, South Carolina. He was 67. Jim was on the Alpha-1 Foundation Board of Directors since...
Divider
12345678910Last

Article Search

Enter keywords in text box and click Search button for results.

Archive