TREND Community

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

11/10/2025

New in Rheumato Journal:
🔹 1 in 5 patients discuss flares
🔹 Top flare symptoms: pain, fatigue, dryness
🔹 Conversations often tied to emotions—especially fear
These findings highlight the importance of centering patient perspectives in Sjögren’s research.
📖 Explore the full study:https://trend.community/wp-content/uploads/2025/09/rheumato-05-00014.pdf

11/03/2025

Our CEO, Maria Picone, attended the ACR Conference last week, connecting with partners dedicated to improving care for people living with rheumatic diseases. TREND Community was proud to be part of the conversations shaping the future of rheumatology.

10/27/2025

At TREND Community, we believe patient voices are data.
Using social listening and advanced analytics, our latest study identified how patients with Sjögren’s disease describe and experience flares. This approach shows how innovation can capture insights that truly reflect patient reality.
Read more about it here: https://tinyurl.com/yszcpha9

10/20/2025

💬Flares are one of the most talked-about experiences for people living with Sjögren’s—but they aren’t always reflected in clinical measures.
Our new publication highlights how patients describe flares in their own words, reminding us why listening directly to communities matters.
❤️ Let’s make research more human.

Read more here:https://trend.community/wp-content/uploads/2025/09/rheumato-05-00014.pdf

10/15/2025

TREND Community was honored to take part in the 2nd Sjögren Europe Patient Conference in Cyprus this October. On Saturday, October 11, we led an interactive session in the Main Conference Hall Triton II: Living With Sjögren: Daily Self-Management Tips From Real People Dry Doesn’t Mean Defeated: Facing Pain & Fatigue Together in the Sjögren’s Community
The conversation focused on the impact of pain and fatigue—how they affect daily life, emotional wellbeing, and relationships—and why recognition of these symptoms matters for more compassionate care and real change. Thank you to everyone who joined and shared their experiences. Your voices made this session possible. 💜