An idea for May Awareness Month is to make this a “Global Registry Month.” Whether you’re completely new to the Global PWS Registry or you’re already enrolled and simply need to update your surveys, May is the perfect time to take part.
The Global PWS Registry is one of the most powerful tools we have for improving the future of people with Prader–Willi syndrome. Through a series of surveys and questionnaires, the Registry collects real‑world information from families and caregivers across the globe. Every entry — every update — helps build a clearer picture of life with PWS.
This data is then used to support researchers, clinicians, and organisations working to understand PWS more deeply. It helps identify trends, highlight unmet needs, guide clinical trial design, and accelerate the development of new treatments. In short, the Registry turns lived experience into scientific progress.
By joining or updating your information, you are directly contributing to:
- Better research — giving scientists the data they need to ask smarter questions and pursue meaningful breakthroughs.
- Better care — helping clinicians understand the challenges families face at different ages and stages.
- Better advocacy — strengthening the evidence base used to push for improved services, support, and resources.
- Better treatments — informing the development of therapies that reflect the real needs of the PWS community.
Your voice matters. Your experience matters. And when thousands of families contribute, the impact is extraordinary.
If you haven’t joined yet — or if it’s been a while since you updated your surveys — please take a moment this May to visit the Registry and make your contribution:
Together, we can make this a month of awareness and action.