TREND Community

06/03/2026

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

06/03/2026

TREND Community is heading to two upcoming conferences this June!

📍 World Orphan Drugs CongressOrphan Drug Congress | Boston, MA | June 9–11
We're looking forward to connecting with patient advocates, industry partners, researchers, and others across the rare disease community.

📍SLEEP 2026 | Baltimore, MD | June 14–17
We're excited to share that we'll be presenting three posters at this year's meeting, continuing to bring forward patient voices and real-world insights in sleep research.

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.

05/28/2026

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]

05/20/2026

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

05/15/2026

Today is PWS Awareness Day 🧡 This community is close to our hearts. PWS is deeply connected to the foundation of TREND Community, and that personal connection continues to guide the work we do every day. Today, we recognize the strength, resilience, and connection within the Prader-Willi syndrome community. We’re honored to listen, learn, and help amplify the voices of patients and caregivers and bring greater awareness to their lived experiences.

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

05/13/2026

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.

05/08/2026

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.

05/07/2026

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

05/06/2026

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.

04/30/2026

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