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Advocacy & Awareness

Advocacy Events, Announcements, and Calls to Action

Helpful Medicaid Information

Understanding Medicaid is essential for individuals with Prader-Willi syndrome (PWS) and their families, but did you know it goes by different names in every state? That can make it confusing to know what benefits you or your loved one may be entitled to.

Medicaid provides critical health and support services, especially for individuals with disabilities. But because each state runs its own Medicaid program, what’s covered, and even what it’s called, can vary widely.

That’s why it’s so important to know how Medicaid works in your state.

Click the button below to:

  • – Learn what Medicaid is called where you live
  • – Understand which services are mandatory and which are optional
  • – Find official state websites to apply or check eligibility
  • – Make sure your family is getting the services you deserve

Voice of the Patient Report

On May 1, 2024, the beginning of PWS Awareness Month, we announced the release of the Voice of the Patient Report. This timely filing marks a significant moment for the Prader-Willi syndrome community! The report gives crucial insights that amplify the perspective of individuals and families affected by PWS and sheds light on aspects of PWS that may not be fully captured in drug trials alone. Integrating the patient’s voice throughout the drug approval process for PWS treatments is essential for the U.S. Food and Drug Administration’s (FDA) comprehensive understanding and impactful decision-making. 

The Voice of the Patient Report was created following the June 2023 PWS Externally-Led Patient-Focused Drug Development (EL-PFDD) Meeting and is compiled of testimonials shared during the EL-PFDD meeting, as well as those submitted virtually.

PWSA | USA, FPWR, and IPWSO extend heartfelt gratitude to the entire PWS community for contributing to the success of this project. To truly amplify the patient’s voice, our entire community must commit to ongoing advocacy efforts. This entails incorporating patient perspectives into all facets of processes and systems, ensuring genuine and enduring change. It’s not solely about isolated advocacy initiatives—it’s about steadfast dedication to embracing and elevating the voices of those directly affected by Prader-Willi syndrome.

You can read the Voice of the Patient Report by clicking the button below.

PWS Advocacy One-Pagers

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PWS Awareness Month Hub

Get everything you need to make an impact this May with our comprehensive Awareness Month Hub. You’ll find customizable and pre-made print materials, eye-catching social media graphics, and a list of 15 meaningful ways to raise awareness. Plus, learn how to take part in our exciting new United We Brunch campaign, celebrate creativity in the Rare Aware Art Share gallery, and discover even more ways to get involved. Whether you’re hosting an event, sharing resources, or advocating in your community, our hub has everything you need to spread awareness and make a difference!

PWS Awareness Month Proclamation Toolkit
– Now Available!

Make an impact this May by securing a PWS Awareness Month or PWS Awareness Day (May 15th) proclamation in your city or state! Our Proclamation Toolkit provides everything you need to take action, including step-by-step guidance, sample cover letters for reaching out to local and state officials, and inspiring success stories from PWS families who have done it before. This is an easy yet powerful way to raise awareness for Prader-Willi syndrome in your community, and we encourage everyone to get involved! If you receive a proclamation, be sure to share it with us so we can celebrate with you.

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Calling Minnesota PWS Families

Calling Minnesota PWS Families

The Minnesota Drug Formulary Committee Meeting will be open at 9 AM CT on Wednesday, Sept. 17, 2025.   Here’s how you can help: The Drug Formulary Committee needs to hear directly from you – the parents, caregivers, and family members who understand the real-life impact of hyperphagia (excessive hunger) in PWS. One of the […]

Michigan PWS Families – Your Voices are Needed!

Michigan PWS Families – Your Voices are Needed!

The Michigan Pharmacy and Therapeutics Committee will hold a Drug Utilization Review (DUR) Board meeting on September 2, 2025, at 6 PM. Please submit your comment by August 20, 2025. Here’s how you can help: The DUR Board needs to hear directly from you – the parents, caregivers, and family members who understand the real-life […]

PWS Advocates Participate in Rare Across America Congressional Meetings

PWS Advocates Participate in Rare Across America Congressional Meetings

Rare Across America, sponsored by the EveryLife Foundation for Rare Diseases, is held every August when Congress is on summer recess and our elected officials are in their home districts.  It is an opportunity for advocates to meet with their Members of Congress and staff at their in-district offices and educate them on the issues […]

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