TREND Community

Turning Anecdotes into Evidence: we're revolutionizing the world's understanding of diseases.

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. 💜

10/14/2025

We’re excited to share our latest “What’s TRENDing” one-pager, highlighting birth journey stories from parents in the Prader-Willi syndrome (PWS) community.

These lived experiences reveal common themes—such as unplanned C-sections, NICU stays, and early challenges with low muscle tone—that underscore the need for support in the earliest days of a child’s life.

Insights like these come directly from PWS Connect, where families share their journeys and help shape the future of rare disease research and care.

Read more in the full one-pager here:

10/09/2025

⏰ Just a few days away! TREND Community is excited to participate in the 2nd Sjögren Europe Patient Conference this Saturday. 📅 October 11 | 13:00–14:00
📍 Main Conference Hall Triton II
✨ Living With Sjögren: Daily Self-Management Tips From Real People
Our talk: Dry Doesn’t Mean Defeated: Facing Pain & Fatigue Together in the Sjögren’s Community
Join us for this interactive session exploring how pain and fatigue impact daily life—and how patient voices can drive more compassionate care.

10/06/2025

✨ Big news from TREND Community! Our manuscript, “Using Social Media Listening to Characterize the Flare Lexicon in Patients with Sjögren’s Disease,” has been accepted in Rheumato Journal!
By analyzing online patient conversations, we’re showing how community voices can become real-world evidence.

📖 Read the full article:https://trend.community/wp-content/uploads/2025/09/rheumato-05-00014.pdf

10/01/2025

A huge thank you to our partners at Pwn4Pwn for bringing Beyond the Sleep to life. Premiered on World Narcolepsy Day, this music video captures the strength and creativity of the narcolepsy community. If you haven’t watched it yet, now’s your chance!

09/29/2025

TREND Community is honored to join the 2nd Sjögren Europe Patient Conference this October in Cyprus!

📅 Saturday, October 11 | 13:00–14:00
📍 Interactive Session – Main Conference Hall Triton II
Session Title: Living With Sjögren: Daily Self-Management Tips From Real People
Our Talk: Dry Doesn’t Mean Defeated: Facing Pain & Fatigue Together in the Sjögren’s Community
Join us as we shine a light on the overlooked burden of pain and fatigue in Sjögren’s. Through lived experiences and real-world insights, we’ll explore how these symptoms impact daily life, emotional wellbeing, and relationships—and how better recognition can drive more compassionate care and meaningful change.
Don’t miss this interactive session designed to center patient voices and practical self-management strategies.

Address

30 S 15th Street
Philadelphia, PA
19102

Website

https://trend.community/

Alerts

Be the first to know and let us send you an email when TREND Community posts news and promotions. Your email address will not be used for any other purpose, and you can unsubscribe at any time.

Shortcuts

Want your practice to be the top-listed Clinic in Philadelphia?