Mark your calendars to join us and make HPS history advocating for future treatments. The HPS Network will host an Externally-Led Patient Focused Drug Development meeting on June 10, 2022. This meeting will be open to the public, with speakers and attendees attending...
Legislative Advocacy - Articles
Tell Congress to Protect the Orphan Drug Tax Credit Today
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
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 medicine...
Ask Your Senators to Support Paid Family and Medical Leave
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...
What’s Your Story?
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 of questions...
The STAT Act
The Speeding Therapy Access Today, or STAT Act, H.R. 1730/S. 670, is a bipartisan bill that was created with the input of the rare disease community aimed at improving the development of and access to therapies for the rare disease community. The centerpiece of the...
For those who currently live in Pennsylvania
PA patients need the right medicine at the right time! 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...
Medical Device Nonvisual Accessibility Act introduced in the U.S. House of Representatives
U.S House of Representative Jan Schakowsky (D) IL introduced H.R. 4853, the Medical Device Nonvisual Accessibility Act to the U.S. Congress. The bill calls upon the Food and Drug Administration to promulgate non-visual accessibility standards for Class II and Class...