Advocacy - Articles

March 2022 Advocacy Update

Rare Disease Day has been brought to the public’s attention since 2008, but even before this day came to be there have been so many initiatives that the HPS Network, and the Rare Disease Community have been advocating for, and standing behind!  One of the biggest asks...

Join Us on June 10, 2022

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...

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...

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...