ADVOCACY
Our hope is that this advocacy page will assist in bringing our collective voices to the table, to make great change in our country and all over the world! Click on the links below to find information on various bills that are in process as well as other opportunities to advocate.
Join Our Team of Advocates
Did you know the HPS Network advocates for federal research funding? Rick Bowman has been championing this cause for us and he needs your help. We're gathering a team of advocates to help secure federal resources for Hermansky-Pudlak Syndrome research. The HPS...
Rare Disease Workgroup Appointment
Ashley Appell has been appointed to New York’s Rare Disease Workgroup. Ashley was selected to serve as a patient advocate. She will express patient concerns and goals to the workshop group. The group will then advise New York Assembly representatives regarding public...
Update on Medical Device Nonvisual Accessibility Act (H.R. 4853)
Progress has been made finding co-sponsors for the Medical Device Nonvisual Accessibility Act (H.R. 4853). The National Federation of the Blind, the organization leading the effort on this bill, held their annual Hill Day and were able to generate some results. Now,...
Update on Speeding up New Therapies and the FDA
As we continue to gather each year for our conferences, we most definitely can say that we are an HPS family, that makes up quite a heartfelt, and inspired community! Our community has also been part of other community organizations that are working together to strive...
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...
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...