Become an Advocate

Become a PFF Advocate

Members of the PFF Advocates regularly contact their members of Congress and their staffs and other officials to advocate for issues of importance to the community. As a member of the PFF Advocates, you will receive alerts when there is an important advocacy issue. The PFF will provide an easy online platform for reaching out to your members of Congress. You will also receive notification of the PFF’s annual Hill Day and of any other PFF advocacy events. Use this form to join the PFF Advocates!

Learn More about the PFF's Policy Priorities


 

We need your voice for PFF Hill Day!

Please join us for PFF Hill Day 2024 on Wednesday, March 6. During PFF Hill Day, you will meet with your legislators and congressional staff via Zoom to advocate for the pulmonary fibrosis community. You will have the opportunity to educate the congressional staff on pulmonary fibrosis, briefly share your experience as a part of the PF community, and provide an understanding on why we need their support to improve patient’s access to supplemental oxygen and to fund PF research.

Improve patients' access to supplemental oxygen

  • In 2024, the PFF is focused on asking members of Congress to change the way that oxygen is covered for patients who have Medicare. Many patients are currently unable to access the type of oxygen and the appropriate services that they need. We are asking Congress to pass legislation that would fix these issues. In partnership with over 20 other patient, professional, and industry groups, the PFF is advocating for this change and needs your voice to emphasize this issue.
  • Learn more about the Four Pillars for Supplemental Oxygen Reform that would provide the basis of legislation.

Fund PF research through the National Institutes of Health and the Congressionally Directed Medical Research Programs

  • We need elected officials to understand why it is so important for PF research to receive robust federal funding. PF research receives tens of millions of dollars of federal funding each year. Meet with your elected officials and their staff to ensure funding for research continues.

As a PFF Advocate, it is critical that members of Congress and their staff hear from you. We need elected officials to understand why it is so important for PF research to receive robust funding and why there needs to be improved access to supplemental oxygen.

To participate in PFF Hill Day, you must be available for scheduled meetings between 9:00 a.m. and 5:00 p.m. in your time zone on March 6. Please only register to participate if you are available for the full duration of the event. Training will be provided and no previous experience with advocacy is necessary.

The fee to participate in PFF Hill Day is $25. Scholarships are available to cover the participation fee. Please email advocacy@pulmonaryfibrosis.org to inquire about receiving a scholarship.

Registration for PFF Hill Day 2024 is now closed. Please email advocacy@pulmonaryfibrosis.org or call 312.224.9802 with any questions. Make the voice of the pulmonary fibrosis community heard on Capitol Hill by participating in PFF Hill Day!

Read the PFF Hill Day FAQ
Capitol-Hill

Sign on to ask Congress to pass Supplemental Oxygen Reform

The Pulmonary Fibrosis Foundation urges Congress to pass legislation to ensure anyone who requires supplemental oxygen can access the most appropriate type of oxygen for their needs.   

Oxygen is the link to seeing your family, participating in day-to-day tasks, and living a life unbound from your home or a medical facility. For many, access to portable, accessible, and clinically appropriate treatment has simply not been available to them.

Congress must prioritize patients. Take action today and urge Congress to pass legislation addressing the challenges associated with supplemental oxygen. 

Because when you can’t breathe, nothing else matters.

Five Steps to Meeting with Your Members of Congress

You can meet with your members of Congress and/or their staffs to advocate for issues that are important to pulmonary fibrosis patients. Here are five steps to schedule and conduct a visit.
  1. Find the contact information for your U.S. Representative and U.S. Senators using the “Find Your Member of Congress” form on this page (below).
  2. Contact your official’s office to request a meeting. During the COVID-19 pandemic, meetings will be virtual for your health and the health of congressional staff. The office may schedule you to meet with your member of Congress or with a member of their health staff. Be prepared to follow up – you may need to call a couple of times and be flexible with the date of your meeting, but persistence will pay off.
  3. Before the meeting, email Kate Gates to request the current “policy asks” for congressional offices and any one page “leave behinds” that you can email to your legislator or their health staff.
  4. During the meeting, remember to identify yourself as someone who lives in the official’s district or state and to share your story. Your personal connection is the most important reason for your advocacy! Limit your story to 1 – 2 minutes, the length of an “elevator pitch.”
  5. Within 24 hours of your meeting, send an email to thank them for their time. This is crucial to build relationships. Then plan when your next visit will be.

 

Find Your Members of Congress

Connecting with your elected officials is the key to effecting legislative change.  Enter your information to find out who your members of Congress are. Your voice is important. Connect with your government officials so that you are heard!