TREND Community

10/15/2026

Today’s the day! Join us for Understanding Hyperphagia: Going Beneath the Surface, a conversation centered on the voices and experiences of individuals living with Prader-Willi syndrome (PWS).

Hear directly from Finn Schneider, Vanessa Child, and Chaz Sberna as they share their experiences with hyperphagia, including the non-visible aspects, what they wish others better understood, and the small wins that have made a difference along the way. The conversation will be moderated by rare disease psychologist Dr. Al Freedman.

⏰ 12:00–1:00 PM PT | 1:00–2:00 PM MT | 2:00–3:00 PM CT | 3:00–4:00 PM ET

There’s still time to register! We hope you’ll join us as we go beneath the surface of hyperphagia.

RSVP here: https://www.eventcreate.com/e/understandinghyperphagia

10/08/2026

📣 Join Us Tomorrow for Beyond the Sessions!

TREND Community, in partnership with the Prader-Willi Alliance of Pennsylvania, invites families and community members to join us for an evening of connection, conversation, and learning!

📅 Tomorrow, Friday, October 9 | 6:30–8:30 PM
📍 TREND Community Office | Philadelphia, PA

We’ll discuss topics important to the PWS community, including excessive daytime sleepiness, clinical trials and research, and resources supporting young adults with PWS.

We hope to see you there!

🔗 Register here: https://lnkd.in/gvFe3xfG

10/07/2026

What does hyperphagia really feel like for someone living with Prader-Willi syndrome (PWS)? Many aspects of the experience are non-visible, from thoughts and emotions around food to challenges that can shape everyday life.

Join us for Understanding Hyperphagia: Going Beneath the Surface…a conversation centered on hearing directly from individuals living with PWS.

Finn Schneider, Vanessa Child, and Chaz Sberna will share their personal experiences with hyperphagia, including what they wish others better understood, what has helped them along the way, and the small wins that have made a difference. Moderated by rare disease psychologist Dr. Al Freedman, the conversation will go beneath the surface to explore the visible and non-visible aspects of hyperphagia and provide a deeper understanding of the lived experience.

🗓️ Date: Thursday October 15, 2026
⏰ Time: 12:00–1:00 PM PT | 1:00–2:00 PM MT | 2:00–3:00 PM CT | 3:00–4:00 PM ET
RSVP here:https://www.eventcreate.com/e/understandinghyperphagia

10/02/2026

Join us for Beyond the Sessions!

TREND Community, in partnership with the Prader-Willi Alliance of Pennsylvaina invites families and community members to join us for an evening of connection, conversation, and learning.
📅 Friday, October 9 | 6:30–8:30 PM
📍 TREND Community Office | Philadelphia, PA
We’ll talk about topics important to the PWS community, including excessive daytime sleepiness, clinical trials and research, and resources supporting young adults with PWS.
Register here: https://www.eventcreate.com/e/beyondthesessions

09/30/2026

Join us for Understanding Hyperphagia: Going Beneath the Surface to hear directly from individuals living with PWS as they share their experiences in their own words. Together, we’ll explore the everyday realities of hyperphagia, what they wish others better understood, and the strategies, support, and small wins that have helped along the way.

🗓️ Date: Thursday October 15, 2026
⏰ Time: 12:00–1:00 PM PT | 1:00–2:00 PM MT | 2:00–3:00 PM CT | 3:00–4:00 PM ET

Whether you’re living with PWS, supporting a loved one, or looking to better understand hyperphagia, we hope you’ll join us.

RSVP here: https://www.eventcreate.com/e/understandinghyperphagia

09/23/2026

There’s more to hyperphagia than what we see on the surface.
Join us for Understanding Hyperphagia: Going Beneath the Surface, a conversation centered on the voices of individuals living with Prader-Willi syndrome (PWS). Hear directly from community members about the non-visible aspects of hyperphagia, its impact on everyday life, and the strategies and small wins that have helped along the way.

🗓️ Date: Thursday October 15, 2026
⏰ Time: 12:00–1:00 PM PT | 1:00–2:00 PM MT | 2:00–3:00 PM CT | 3:00–4:00 PM ET

Save the date and join us as we go beneath the surface of hyperphagia.

RSVP here: https://www.eventcreate.com/e/understandinghyperphagia

09/22/2026

Today is World Narcolepsy Day! TREND Community is proud to work with the narcolepsy community to better understand the real-life experiences of people living with the condition and help make sure those experiences are heard in research. We’re sharing these resources from Project Sleep to help spread awareness and understanding. Visit project-sleep.com to learn more.

To learn more about TREND's work in narcolepsy visit or website at: https://rebrand.ly/14bg4f6

09/08/2026

TREND is heading to the Global Genes Rare Drug Development Symposium this week! 🧬 Our CEO & Co-Founder, Maria Picone and COO, Lauren Dougherty are looking forward to connecting with the rare disease community, learning from others across the field, and continuing conversations around the importance of bringing patient and caregiver voices into rare disease 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.

08/26/2026

Our latest blog is live! TREND Community Co-Founder and CTO Christopher DeFelice shares his perspective on the growing presence of AI-generated content online and what it could mean when analyzing patient conversations and experiences.

As the way people create and share content continues to change, understanding where that information comes from is more important than ever.

Check out the full blog:

08/19/2026

TREND Community is happy to share this upcoming webinar from Soleno Therapeutics, a Neurocrine Biosciences Company! This is a great opportunity for the PWS community to learn more about preparing for the school year and supporting individuals with PWS and hyperphagia through the transition. See the details below to register!

PWS Community - You're Invited! 📢
Soleno Therapeutics, a Neurocrine Biosciences Company, recently announced it will host a free back-to-school webinar focused on preparing and supporting individuals with PWS and hyperphagia in the transition into the school year.

When: Thursday, August 20, 2026
Time: 7:30-9pm ET | 4:30-6pm PT
Where: ZOOM
🔗 https://event.on24.com/wcc/r/5424990/01A0A60C4A795BE16167539D9068E9EB

As part of this webinar, a mother of a loved one with PWS will share her experience as a schoolteacher and her family's experience with VYKAT XR. In addition to inviting families, Soleno is also hoping to encourage school personnel (e.g., teachers, nurses, counselors) to attend and add the information shared to their toolbox for caring for students living with PWS and hyperphagia.