TREND Community

Sleep issues in Prader-Willi syndrome are often misunderstood and overlooked. Thank you to the PWS community for continuing to raise awareness around Excessive Daytime Sleepiness (EDS) and the real impact it can have on daily life. 🧡
If you're interested in learning more about the TEMPO study or want guidance before getting started, please reach out — we're here to help:
📩 Message PWAofPA directly through Messenger
📧 Email Jess at [email protected]
👩‍💼 Or contact Maria at [email protected]

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.

We’re excited to share that our CEO & Co-Founder, Maria Picone will be presenting at BioNJ conference on May 12 at the Liberty Science Center.

Maria Picone will be participating in the Company Pitch Presentations (Session 2) in the Theater Room, delivering a 2-minute pitch starting at 1:20 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.

his past Saturday, our CEO and Co-Founder Maria Picone attended the 2026 Philadelphia Tri-State Walk for Sjögren’sin Philadelphia, PA. Sjögren's Foundation
Always grateful for the chance to connect with the Sjögren’s community, listen, learn, and show support. 💙

To learn more about TREND please visit our website: https://rebrand.ly/14bg4f6

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.

April is Fabry Awareness Month. We’re wearing our Fabry shirts this month in support and proud to stand alongside the Fabry Support & Information Group and the broader Fabry community. Together, we’re helping bring real patient and caregiver voices forward and raise awareness. Grateful for the work Fabry Support & Information Group does every day.

To learn more about TREND and our work in Fabry please visit our website: https://rebrand.ly/14bg4f6

April is Sjögren Awareness Month 💙

At TREND Community, we’re proud to partner with Sjögren Europe to help bring more visibility to Sjögren through lived experiences. This glossary helps break down key terms and make information more accessible for the community. Check out this edition and explore the other glossary editions on Sjögren Europe page.

To learn more about TREND and the work we’ve done in Sjögren, visit our website: https://rebrand.ly/14bg4f6

We’re excited to share that our CEO & Co-Founder, Maria Picone will be attending -Willi Alliance of NY in Syracuse, NY on April 17–18! She’ll be speaking during a Catalysts for Change session on sleep disorders in PWS and spending time at the meet-and-greet and lunch connecting with the community. Will you be there? Let’s connect! Visit our website at https://rebrand.ly/1viil6c and fill out the contact form under the Resources section at the bottom!

We’re excited to be at American Academy of Neurology (AAN) with FFF Enterprises—and to introduce their new Brain Health program!
As innovation accelerates, one reality remains: the system surrounding the patient is still fragmented.

By bringing forward:
• Patient and caregiver voices
• Real-world experiences and behavioral insights
• Community-driven engagement

FFF Enterprises' patient support model is designed to remove barriers to therapy—improving access, supporting adherence, and ensuring innovation reaches patients in the real world.

If you’re committed to changing how care is experienced—not just delivered—let’s connect at American Academy of Neurology (AAN)! Visit our website at https://rebrand.ly/1viil6c and fill out the contact form under the Resources section at the bottom of the page.

TREND Community | Turning Anecdotes Into Evidence™ We’re a digital health analytics company that turns the conversations of rare, chronic, and emerging disease communities into actionable insights.