Navigating the U.S. health insurance landscape for children with rare diseases: a qualitative study of parents’ experiences
Background: Parents of children with rare diseases often face uncertainty about diagnosis, treatment, and costs associated with healthcare for their child. Health insurance status impacts each of these areas, but no U.S. study has explored parents’ perceptions of the...
2022 State of the Union Address
As we look forward to a promising 2022, President and CEO of the Alpha-1 Foundation, Scott Santarella shares his vision for the year ahead in this annual State of the Union Address. Together, we will move forward and embrace the new year with the commitment and...
Alpha-1 Foundation Unveils COVID-19 Event Grid for 2022 Events
The Alpha-1 Foundation has created a detailed guideline of criteria that will be used to determine Foundation event activities in 2022. The Alpha-1 Foundation COVID Grid takes into consideration multiple factors such as positive cases in a given locality,...
Important COVID-19 Omicron Variant Update for Alphas
December 29, 2021- Important COVID-19 Omicron Variant Update for Alphas While Omicron may be mild in patients without lung disease, this variant continues to be a risk for the Alpha-1 patient population. Please note the CDC guidelines are for the general public but...
Grifols Hits Milestone of Screening One Million Patients for Alpha-1
“On behalf of Alpha-1 patients and families, we applaud Grifols for this incredible milestone of 1 million screenings through their free testing program. Your commitment to the community is outstanding and raising awareness for Alpha-1 , as well as, providing better...
Coronavirus (COVID-19) Update: FDA Authorizes First Oral Antiviral for Treatment of COVID-19
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 for oral use) for the treatment of mild-to-moderate coronavirus disease (COVID-19) in adults and...
Updated COVID-19 Guidance & Recommendations for Alphas regarding the Omicron Variant
Emergence of Omicron CDC has been collaborating with global public health and industry partners to learn about Omicron, as we continue to monitor its course. CDC has been using genomic surveillance throughout the course of the pandemic to track variants of SARS-CoV-2,...
60+ Organizations Sign-On to Letter to Protect Orphan Drug Tax Credit for Individuals Living with Autoimmune Disease
On behalf of the estimated 50 million Americans with autoimmune and immune-mediated diseases, the undersigned 64 organizations write to you regarding the importance of the Orphan Drug Tax Credit (ODTC) for people and families living with autoimmune disease and urge...
Matsui Introduces Bipartisan Legislation to Support Access to Evidence-based Care for Rare Disease Patients
The Alpha-1 Foundation congratulates Haystack Project for their success in getting the Access to Rare Indications Act introduced yesterday, led by Representatives Matsui (D-CA) Thompson (D-CA), Kelly (R-PA) and Mullin (R-OK). The Foundation is proud to be a member of...
