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.
Independent Expert for albinism, Muluka-Anne Miti-Drummond presented to the Human Rights Council in Geneva on March 7, 2025, the following:
Advocacy Opportunities:
HPS Network supports virtual pulmonary rehabilitation bill
HPS Network supports virtual pulmonary rehabilitation bill Pulmonary rehabilitation is a critical medical service to improve the quality of life for many people living with chronic lung disease. Medicare covers pulmonary rehabilitation delivered in certain settings,...
Urge Congress to protect crucial funding for NIH and FDA
Urge Congress to protect crucial funding for NIH and FDA The Fiscal Year 2026 (FY26) appropriations process continues! Congress has important decisions to make in the upcoming months regarding the fiscal year 2026 funding for the National Institutes of Health (NIH)...
Protect Medicaid for Rare Disease Patients
Protect Medicaid for Rare Disease Patients In the coming months, Congress could vote on legislation that would cut Medicaid coverage and funding from millions of rare disease patients. We need your help to tell members of Congress to vote NO on cutting Medicaid...
Ad Hoc Group for Medical Research welcomes Congress
The HPS Network joined the Ad Hoc Group for Medical Research in welcoming members of the 119th Congress As a new congressional session begins, the letter introduces the Ad Hoc Group and emphasizes the critical importance of federal investment in NIH to improve the...
Supplemental Oxygen Access Reform (SOAR) Act
HPS Network supports SOAR Act (S. 3821, H.R. 7829) The HPS Network joins with a coalition of other patient advocacy groups and interested professionals to support the Supplemental Oxygen Access Reform Act or SOAR Act (S. 3821, H.R. 7821). The legislation would...
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. If you are interested and able to meet with your members of Congress either virtually or in person, please send us your...
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...