TREND Community

When cataplexy occurs in individuals living with Prader-Willi syndrome (PWS), it can be confusing, concerning, and difficult to recognize.

Join us for Shedding Light on PWS and Sleep: Understanding Cataplexy, a conversation bringing together caregivers, individuals with lived experience, and clinicians to explore the realities of cataplexy in PWS. We'll discuss how symptoms may present, the relationship between cataplexy and sleep disorders, and what families have learned along the way.

🗓️ Wednesday, June 17, 2026
⏰ 2:00–3:30pm ET/1:00-2:30pm CT/12n-1:30pm MT/11:00am-12:30 PT

More than a webinar, this is an opportunity to learn from both experts and the community, ask questions, and connect with others navigating similar experiences.

RSVP here: https://www.eventcreate.com/e/cataplexy-pws-webinar

We’re happy to help share this upcoming event from Folia Health focused on navigating uncertainty and emotional regulation in Prader-Willi Syndrome (PWS). Join Dr. Al Freedman for a conversation around practical tools and support for caregivers and families.

🗓 May 21, 2026 | 12–1 PM EST
Be sure to check it out and register!

Join us for an honest (and free) conversation about uncertainty in rare disease, and practical ways to feel more grounded with psychologist and rare disease advocate, Dr. Albert Freedman. 🤍

What to expect:
🧰 Practical tools for "what if" thinking and anxiety about the unknown
🤍 Permission to feel overwhelmed and how to work through it
🧭 Strategies for navigating transitions and the unexpected

Ready to register?
When: May 21 at 12pm EST
Sign up: https://shorturl.at/bp4mk

We’re excited to be at American Thoracic Society Society Conference in Orlando on May 18. Our COO, Lauren Dougherty, will be presenting: Understanding Patient Experience Through Social Listening: Impact of Pulmonary Manifestations on Quality of Life in Patients With Sjögren’s Disease. Sponsored by Amgen. Our presentation is May 18 | 11:30 AM – 1:15 PM

Will you be there? Let’s connect! Visit our website at https://rebrand.ly/14bg4f6 and fill out the contact form under the Resources section at the bottom of the page.

TREND Community is on the move this May! We’ll be attending the Prader-Willi Syndrome Association USA Advocacy in Action PWS Fly-In (May 4–7) in Washington, DC, BioNJ (May 12) in Jersey City, American Thoracic Society in Orlando (May 18), and ISPOR—The Professional Society for Health Economics and Outcomes Research in Philadelphia (May 17–20). Looking forward to connecting with partners, advocates, and the broader community, and continuing conversations around patient voice and real-world insights.

FB: Will you be there? Let’s connect! Visit our website at https://rebrand.ly/14bg4f6 and fill out the contact form under the Resources section at the bottom of the page.