COVID-19 Legislative Update
Monday, December 21 Congress Reaches an Agreement on COVID-19 Relief Bill and Surprise Medical Billing COVID Relief Package Over the weekend, Congressional leadership reached an agreement on a new round of COVID-19 relief initiatives totaling more than $900 Billion....
20th Gordon L. Snider Critical Issues Workshop: The Promise of Gene-based Interventions in Alpha-1 Antitrypsin Deficiency
December 12, 2020- The Alpha-1 Foundation hosted the virtual 20th Gordon L. Snider Critical Issues Workshop entitled, The Promise of Gene-based Interventions in Alpha-1 Antitrypsin Deficiency on Saturday, December 12, 2020. The day was divided into three sections: The...
Tax Benefits of the CARES Act
Tax Benefits of the CARES Act The CARES (Coronavirus Aid, Relief, and Economic Security) Act is designed to help you, businesses andnonprofits facing economic hardship during the coronavirus pandemic. Some key provisions are set to expire at year's end. STANDARD...
Intellia Therapeutics Achieves Normal Human Alpha-1 Antitrypsin Protein Levels in Non-Human Primates Through Targeted Gene Insertion for the Treatment of AAT Deficiency
“Workshops, such as today’s 20th Gordon L. Snider Critical Issues Workshop titled “The Promise of Gene-based Interventions of Alpha-1 Antitrypsin Deficiency” allow researchers to exchange their findings in a collaborative forum to help advance science in the pursuit...
A Look Back at the 2020 November Virtual Alpha-1 Awareness Month
November Alpha-1 Awareness month successfully obtained its goal and raised awareness for Alpha-1 Antitrypsin Deficiency around the United States. November 2020 was a unique year, making all annual awareness month activities and initiatives virtual while still allowing...
2020 Virtual Alpha-1 Lobby Day Recap
The Alpha-1 Foundation held its first ever Virtual Alpha-1 Lobby Day on Tuesday, November 17, 2020 in order to bring awareness to three prominent issues that affect the broader Alpha-1 community. The Virtual Lobby Day was held in conjunction with Alpha-1 Awareness...
Ad Hoc Group for Medical Research Letter to President-elect Joe Biden
December 4, 2020 The Honorable Joseph R. Biden, Jr. President-elect 1401 Constitution Ave. NW Washington, DC 20230 Dear President-elect Biden: The Ad Hoc Group for Medical Research, and the 349 undersigned member organizations representing patients, clinicians,...
Breaking News: Jonathan Maidment, first person with a rare disease to achieve the Triple Crown of Hiking
FOR IMMEDIATE RELEASE November 19, 2020- After hiking the Continental Divide for the past five months, Jonathan Maidment completes his third hiking journey and achieves the Triple Crown! Maidment adds this last hike of the Continental Divide Trail to complete this...
Medicare: Open Enrollment for 2021
Medicare Open Enrollment begins on October 15, 2020 and ends on December 7, 2020. During this time, Medicare beneficiaries can compare coverage options like Original Medicare and Medicare Advantage and choose health and drug plans for 2021. Medicare health and drug...