Our Impact

Turning Hope into Progress

For more than two decades, the Foundation for Prader-Willi Research (FPWR) has worked to move PWS research forward faster. We invest in promising science, build the tools research requires, connect experts and partners, and ensure that the priorities of people with Prader-Willi syndrome shape the path ahead. Together with families, researchers, clinicians, industry partners, and supporters around the world, we are turning bold questions into discoveries, and discoveries into meaningful treatments and better care.

Bold Ideas Become Breakthroughs

Many of today's most promising discoveries began as bold ideas that simply needed funding to get started. By funding innovative, high-impact research, FPWR provides the early support that researchers need to test new hypotheses, refine promising discoveries, and build the scientific foundation for future treatments.

Our investments have accelerated discoveries across every major area of PWS research, including:

• • Hyperphagia, appetite, and metabolism
  • Behavior and mental health
  • Cognition and brain development
  • Genetics and molecular biology
  • Gene therapy and gene activation
  • Clinical care and quality of life
  • Research tools and clinical trial readiness

By investing in innovative, high-risk research, FPWR has helped scientists generate the data needed to attract millions of dollars in additional funding and advance their work toward clinical development.

The Tools That Power Discovery

Scientific discovery depends on more than individual research projects. It requires shared resources, reliable data, validated research tools, and strong collaboration across the scientific community.

FPWR has helped build the research infrastructure that makes this possible. By investing in resources that serve the entire PWS research community, we have reduced barriers to discovery, strengthened collaboration, and enabled researchers to answer bigger questions more quickly.

Among the most important resources FPWR has helped develop are:

Biorepositories

High-quality biological samples are now available to researchers, accelerating studies and helping scientists validate discoveries using shared resources.

Cellular and Animal Models

Researchers around the world now have access to cellular and animal models that make it possible to study PWS biology, test new therapeutic approaches, and build on one another's discoveries instead of starting from scratch.

Patient Registries

Thousands of families have contributed real-world health information through the Global PWS Registry, creating one of the most valuable sources of natural history and patient-reported data for PWS research and clinical trial planning.

Clinical Outcome Measures

Researchers and clinical trial sponsors now have validated tools to measure PWS-specific symptoms and treatment benefit, improving the quality of PWS clinical trials and making it easier to evaluate new therapies.

Progress Through Partnership

PWS is too complex for any one researcher, institution, or company to solve alone. Today, researchers, clinicians, industry partners, and families are working together in ways that are accelerating discovery, strengthening clinical research, and bringing new treatments closer to reality.

The PWS Clinical Investigation Collaborative (PWS-CLIC) is a growing network of expert clinicians that are sharing knowledge to improve how we care for people with PWS, expanding our capacity to conduct high-quality clinical research and trials.

The PWS Clinical Trials Consortium (PWS-CTC) has brought together clinicians, researchers, and pharmaceutical companies to solve shared challenges in PWS clinical development. Through this collaboration, the community is developing common tools, improving trial readiness, and making it easier to evaluate new therapies across studies.

Beyond these initiatives, FPWR regularly convenes researchers, clinicians, industry leaders, and families through scientific meetings, working groups, workshops, and collaborative initiatives. These connections spark new ideas, encourage data sharing, reduce duplication of effort, and help promising discoveries move more quickly from the laboratory to clinical testing.

Scientific progress happens faster when people work together. By creating opportunities to share knowledge, solve problems collectively, and align around common goals, FPWR is helping build a stronger, more connected PWS research community.