Finding a doctor who understands Prader-Willi syndrome (PWS) isn’t always easy—especially in urgent or emergency situations. That’s why we’re excited to introduce a new tool that puts trusted PWS medical guidance into the hands of those who need it most: families, caregivers, and frontline clinicians.
Meet RareCAP
The Rare Disease Clinical Activity Protocol (RareCAP) platform is a new, free online resource offering expert-developed clinical protocols for rare diseases—including PWS. It was created to support medical professionals who may not be familiar with a particular condition and to empower caregivers with direct access to clear, reliable, up-to-date medical guidance.
We’re proud to say that PWS specialists from the PWS Clinical and Scientific Collaborative (PWS-CLIC) are already contributing protocols to RareCAP, making decades of experience more accessible than ever before.
What's available for PWS?
Several PWS-specific protocols are already live on RareCAP, including:
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A flowchart for emergency room visits due to new GI complaints (originally developed by the PWSA | USA Clinical Advisory Board)
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Guidance for recognizing and responding to blood clots
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Feeding tube considerations, based on insights from a PWS-CLIC/Global PWS Registry collaboration
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Support protocols for serious mental health concerns or altered mental status
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Considerations for psychiatric medications in PWS
All protocols are created and reviewed by leading PWS experts to ensure accuracy and relevance.
How to Access the Protocols
RareCAP is designed to be easy (and free) to use for both caregivers and clinicians:
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Go to rarecap.org.
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Click “Log in,” then choose “Continue as guest.”
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Search for “Prader-Willi syndrome” under the Protocols tab.
You’ll get immediate access to downloadable, expert-backed guidance that can be shared with any provider involved in your loved one’s care.
Why RareCAP Matters
RareCAP is more than a medical database—it’s a bridge between rare disease knowledge and real-time care. Whether you’re sitting in an emergency room, visiting a new doctor, or preparing for a specialist appointment, these protocols offer a trusted, expert-reviewed roadmap for managing PWS-specific challenges.
The platform also allows users to suggest edits and comment on protocols, helping keep the content responsive to the evolving needs of the PWS community.
And this is just the beginning—more PWS protocols are on the way. Bookmark the RareCAP website, share it with your care team, and return often to explore new additions.
