TREND Community

10/28/2026

Today, TREND Community CEO Maria Picone is attending the FDA’s Rare Disease Framework Initiative Public Meeting!
The meeting brings together patients, advocates, researchers, and industry stakeholders to discuss new approaches to rare disease drug development and the unique challenges faced by small patient populations.
At TREND Community, we believe patient perspectives are essential to advancing research and shaping the future of rare disease treatments. We look forward to the discussions ahead!

10/21/2026

Going Beneath the Surface of Hyperphagia
What does living with hyperphagia really look and feel like?

Last week, TREND Community hosted a webinar titled Understanding Hyperphagia: Going Beneath the Surface, featuring two incredible individuals living with Prader-Willi syndrome (PWS), Finn Schneider and Vanessa Child.

Through their personal stories, Finn and Vanessa reminded us that hyperphagia is about so much more than hunger. From the emotional and mental challenges that often go unseen to the importance of support systems and setting personal goals, their experiences highlighted just how differently hyperphagia can affect each individual. A heartfelt thank you to Finn and Vanessa for sharing their experiences so openly, and to Dr. Al Freedman for moderating this meaningful conversation!

🎥 Missed the webinar? Watch the recording and hear directly from Finn and Vanessa: https://drive.google.com/file/d/15vgvaHPPFCpXqooikjnYwFSmFufbBWPX/view?usp=share_link

10/20/2026

We're happy to help spread the word about this upcoming webinar hosted by Soleno Therapeutics!

Join the conversation on October 22 to hear firsthand experiences from individuals and caregivers in the Prader-Willi syndrome (PWS) community and learn more about starting treatment for hyperphagia.

📅 Thursday, October 22 | 7:30 PM ET

Register here: https://bit.ly/4APFxDA

When: Thursday, October 22, 2026
4:30 PM PT | 7:30 PM ET

Register to learn what individuals, caregivers, and care teams need to know about starting treatment for hyperphagia in PWS and hear firsthand experiences from a residential program nurse, a caregiver, and a resident who takes VYKAT XR.

VYKAT XR is a prescription medicine used to treat extreme hunger, constant thoughts about food, and constant urge to eat that cannot be satisfied with food (hyperphagia) in adults and children 4 years of age and older with PWS.

Register at https://bit.ly/4APFxDA

10/19/2026

We’re excited to share that TREND Community will be presenting at American College of Chest Physicians 2026!

Join us for Poster Presentation #3137: “Understanding the Lexicon and Experience of ‘Brain Fog’ in Online Narcolepsy and Idiopathic Hypersomnia Communities: A Social Listening Analysis.”

📅 October 20, 2026
⏰ 1:45–2:30 PM MST

If you’ll be at CHEST, we hope you’ll stop by and learn more about what we heard directly from the narcolepsy and idiopathic hypersomnia communities.

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