TREND Community

01/26/2026

Sleep challenges are a real — and often misunderstood — part of life with Prader-Willi syndrome. Many families spend years questioning what they’re noticing or being told it’s “just PWS,” without clear answers or validation.
Shedding Light on Sleep Disorders in Prader-Willi Syndrome brings caregivers and clinicians together for an honest, experience-centered conversation about sleep in PWS. Caregivers will share what they observed, what may have been missed early on, and what they wish they had known sooner. Clinicians will help connect those lived experiences to medical context and practical guidance families can take with them.
This is not a traditional lecture — it’s a space for shared learning, understanding, and community.

Speakers include:
-Dr. Aaron Chidekel, Nemours Children’s Hospital
-Dr. Amee Revana, Texas Children’s Hospital
-Dorothea Lanz, PWSA | USA
-Elaine Towle, PWSA | USA
-Lynn Garrick, PWSA | USA

🗓️ January 29, 2026
⏰ 12:00–1:00 PM EST
👉 RSVP here: https://www.eventcreate.com/e/sleep-disorders-pws-webinar

01/20/2026

Many families navigating PWS struggle with sleep issues — often long before they’re clearly understood or addressed.

Shedding Light on Sleep Disorders in Prader-Willi Syndrome is a space for caregivers and clinicians to come together, share real experiences, and talk honestly about sleep in PWS.

🗓️ Thursday, January 29, 2026 | ⏰ 12:00–1:00 PM EST
This conversation is about validation, learning, and reminding families that they’re not alone.

👉 RSVP here: https://www.eventcreate.com/e/sleep-disorders-pws-webinar

01/13/2026

Sleep challenges are a real — and often misunderstood — part of life with Prader-Willi syndrome.

Join us for Shedding Light on Sleep Disorders in Prader-Willi Syndrome, a webinar centered on caregiver experiences and clinical insight, with a focus on listening, learning, and understanding the real-world impact of sleep issues in PWS.

🗓️ Thursday, January 29, 2026
⏰ 12:00–1:00 PM EST

This is not a traditional lecture. It’s an honest conversation about what families see, feel, and wish they had known sooner — paired with guidance from clinicians who help translate lived experience into care.

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

01/05/2026

Happy New Year! As we begin 2026, we’re grateful for the trust placed in TREND Community by those living with the conditions we seek to better understand as well as the caregivers, advocates, clinicians, and partners. We look forward to continuing to listen closely to your experiences and needs so we can help to close gaps in the understanding of these conditions and share this knowledge publicly.
— TREND Community

12/29/2025

As we head into a new year, the TREND Community team is excited to continue its focus on elevating patient and caregiver voices, and more deeply understanding those living with health conditions, especially rare and chronic, and translating real-world conversations into meaningful insights. Thank you for being part of this journey, we’re looking forward to what’s next!

12/22/2025

As the year comes to a close, we want to say thank you to the patient communities, caregivers, advocates, clinicians, and partners who shared their time and experiences with us this year.

Your thoughts, questions, and learnings are what drive everything we do — from social listening to community-led research to scientific publications.

We’re grateful for the trust you place in TREND and we look forward to continuing to close the gaps in the understanding of diseases.

12/15/2025

There is also a new editorial in this month’s Journal of Clinical Sleep Medicine that takes a closer look at pitolisant and its potential role in PWS.

The commentary reflects on findings from the recent Harmony Biosciences study and highlights early signs that pitolisant may help not only with daytime sleepiness but also with hyperphagia and certain behavior challenges, especially in younger children.

It also speaks to why treating sleepiness matters so much for overall well being in PWS. You can read the editorial here:

This link will take you to a page that’s not on LinkedIn

12/09/2025

We’re excited to share an amazing project from our friend Jeremy Hosterman, founder of Diverse Voices Through Animation.

These workshops give people with Prader-Willi Syndrome (PWS) a joyful, food-free space to connect, collaborate, and bring their own animated stories to life. Participants build friendships, grow confidence, and create films that highlight the creativity and perspective of the PWS community.

If you’d like to support their work or help spread the word, you can learn more and donate here:

Diverse Voices Through Animation helps people with Prader-Willi Syndrome share their stories.

12/01/2025

We’re happy to share a new publication from Harmony Biosciences in the November issue of the Journal of Clinical Sleep Medicine.
The study looked at pitolisant for excessive daytime sleepiness in people living with PWS. Higher doses showed encouraging improvements in daytime sleepiness and some behavioral symptoms, with safety results that were consistent with what has already been seen in other studies.
It’s meaningful progress for a community that continues to look for better support and better treatments.

You can read the publication here:

The official peer-reviewed journal of the American Academy of Sleep Medicine.

11/24/2025

We’re excited to share our new WHAT’S TRENDing report looking at the conversations and experiences the PWS community has been talking about over the past year.

Families opened up about sleep, hunger, hyperphagia, and the day-to-day realities of caring for someone with PWS. Sleep and sleep disorders came up more than anything else, and pitolisant was the most talked-about medication. We also saw a lot of emotion in these conversations — everything from pride and gratitude to worry and fear — which really speaks to how active and supportive this community is.

Thank you to everyone in PWS Connect, our partners at Prader-Willi Syndrome Association | USA, and all across social media who continue to share their stories. Your voices shape this work and help others feel less alone.

You can read the full report here:

11/17/2025

Research like this is possible only through collaboration 💡
A huge thank-you to our partners at Sjögren Europe, 's UK and all co-authors for helping advance understanding of flares in Sjögren’s disease.
This study was supported by Amgen Inc.
Together, we’re turning community voices into evidence that can shape better care.
Read about it here: https://lnkd.in/e6JqFZ6m

11/13/2025

Today, on Schinzel-Giedion Syndrome Awareness Day, we’re honoring the strength of families affected by this rare condition. In partnership with the Schinzel-Giedion Syndrome Foundation, our 2024 Community Voice Report highlights powerful stories and insights from this community.
Read here:https://trend.community/wp-content/uploads/2024/09/2024_09_25_SGS_CVR_Final-3.pdf