Author: Alpha-1 Foundation

“Our industry partners at CSL Behring are keeping in close contact with us regarding updates for the Alpha-1 community. The […]

Read More… from ZEMAIRA® Alpha-1 Proteinase Inhibitor (Human) Update

By Robert A. Sandhaus, MD, PhD, FCCP and Bruce C. Trapnell, MD Previously, we discussed vaccination against SARS-2 CoV, the […]

Read More… from History of Vaccines & Update on COVID-19 Vaccination

TESTING There is no one recommendation for testing children for Alpha-1. This is a question that should be answered with […]

Read More… from Alpha-1 Kids: Your Healthcare Checklist

Background: Parents of children with rare diseases often face uncertainty about diagnosis, treatment, and costs associated with healthcare for their […]

Read More… from Navigating the U.S. health insurance landscape for children with rare diseases: a qualitative study of parents’ experiences

As we look forward to a promising 2022, President and CEO of the Alpha-1 Foundation, Scott Santarella shares his vision […]

Read More… from 2022 State of the Union Address

The Alpha-1 Foundation has created a detailed guideline of criteria that will be used to determine Foundation event activities in […]

Read More… from Alpha-1 Foundation Unveils COVID-19 Event Grid for 2022 Events

December 29, 2021- Important COVID-19 Omicron Variant Update for Alphas  While Omicron may be mild in patients without lung disease, […]

Read More… from Important COVID-19 Omicron Variant Update for Alphas

“On behalf of Alpha-1 patients and families, we applaud Grifols for this incredible milestone of 1 million screenings through their […]

Read More… from Grifols Hits Milestone of Screening One Million Patients for Alpha-1

Today, the U.S. Food and Drug Administration issued an emergency use authorization (EUA) for Pfizer’s Paxlovid (nirmatrelvir tablets and ritonavir tablets, co-packaged […]

Read More… from Coronavirus (COVID-19) Update: FDA Authorizes First Oral Antiviral for Treatment of COVID-19

Emergence of Omicron CDC has been collaborating with global public health and industry partners to learn about Omicron, as we […]

Read More… from Updated COVID-19 Guidance & Recommendations for Alphas regarding the Omicron Variant

On behalf of the estimated 50 million Americans with autoimmune and immune-mediated diseases, the undersigned 64 organizations write to you […]

Read More… from 60+ Organizations Sign-On to Letter to Protect Orphan Drug Tax Credit for Individuals Living with Autoimmune Disease

The Alpha-1 Foundation congratulates Haystack Project for their success in getting the Access to Rare Indications Act introduced yesterday, led […]

Read More… from Matsui Introduces Bipartisan Legislation to Support Access to Evidence-based Care for Rare Disease Patients

December 6, 2021 The Honorable Janet Yellen Secretary U.S. Department of the Treasury 1500 Pennsylvania Ave, NW Washington, DC 20220 […]

Read More… from Organizations Submit Comments on Surprise Medical Billing

November 29, 2021 The Honorable A. Donald McEachin (D-VA) House of Representatives Washington, DC 20515 The Honorable Rodney Davis (R-IL) […]

Read More… from Letter in Support of HR 5801

November 30th marked the last day of Alpha-1 Awareness Month and this year was the most successful to date! WHAT A […]

Read More… from Alpha-1 Awareness Month Recap: Week 4

The Alpha-1 Foundation hosted the virtual 23rd Gordon L. Snider Critical Issues Workshop entitled Liver Biomarkers and the Path to […]

Read More… from 23rd Gordon L. Snider Critical Issues Workshop

November 23, 2021- To stabilize future ZEMAIRA supply, CSL Behring has been evaluating long-term enhancements to our manufacturing capabilities including […]

Read More… from ZEMAIRA® Alpha-1 Proteinase Inhibitor (Human) Update

As Thanksgiving quickly approaches, family and friends are gathering from across the country to support one cause: Alpha-1! The Alpha-1 […]

Read More… from Alpha-1 Awareness Month Recap: Week 3

November 15th marked the halfway point of 2021 Alpha-1 Awareness Month and this year’s campaign shows no signs of slowing […]

Read More… from Alpha-1 Awareness Month Recap: Week 2

The Alpha-1 Foundation convened the third Virtual Alpha-1 Lobby Day on Wednesday, November 10, 2021 during the annual Alpha-1 Awareness […]

Read More… from 2021 Fall Virtual Alpha-1 Lobby

November is finally here and with its arrival comes cooler temperatures, autumn scenery, and most importantly, Alpha-1 Awareness Month! On […]

Read More… from Alpha-1 Awareness Month Recap: Week 1

November 1, 2021- The Alpha-1 Foundation Virtual Walk 2021 kicks off today and is off an amazing start! With over […]

Read More… from Grab your sneakers… it’s time for the Alpha-1 Virtual Walk 2021!

For Immediate Release: October 20, 2021 Today, the U.S. Food and Drug Administration took action to expand the use of […]

Read More… from Coronavirus (COVID-19) Update: FDA Takes Additional Actions on the Use of a Booster Dose for COVID-19 Vaccines

Today, CDC Director Rochelle P. Walensky, M.D., M.P.H., endorsed the CDC Advisory Committee on Immunization Practices’ (ACIP) recommendation for a […]

Read More… from CDC Expands Eligibility for COVID-19 Booster Shots