Ashley Appell appointed to New York State Rare Disease Advisory Council Ashley Appell, the original member of the HPS Network, was nominated to serve on the recently created New York State Rare Disease Advisory Council by James McDonald, M.D., M.P.H., the New York...
Legislative Advocacy - Articles
Supplemental Oxygen Access Reform (SOAR) Act
HPS Network supports SOAR Act (S. 1406, H.R. 2902) 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. 1406, H.R. 2902). The legislation would reform...
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...
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...