The HPS Network was awarded a $150,000 grant on January 31, 2022, as part of the Rare As One (RAO) Network, a program of the Chan Zuckerberg Initiative (CZI). The HPS Network is currently completing a two-year grant from CZI. The first grant has allowed the Network...
The current draft of the Build Back Better Act includes language to amend the Orphan Drug Tax Credit (ODTC) in ways that would severely undermine efforts to ensure more patients have access to a safe and effective drug for their rare condition. Please reach out to...
Ask Congress to Support the Safe Step Act (H.R. 2163/S.464) Step therapy, often called “fail first,” is a process that requires patients to take one or more alternative medications chosen by their insurer before permitting patients to access the...
The U.S. House of Representatives has passed the Build Back Better Act, and now it’s time for the Senate to act so this legislation can be signed into law! Contact your Senators now and let them know that the rare disease community is counting on them to include paid...
The EveryLife Foundation for Rare Diseases launched What’s Your Story?, an online rare disease story bank for advocates like you to share your experiences on a wide-range of issues impacting the rare disease community. What’s Your Story? presents a series...
