TREND Community

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

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

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.

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:

trend.community

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.

TREND Community CEO Maria PiconePicone and COO Lauren DiStefano Dougherty are heading to Savannah, Georgia this weekend for the Prader-Willi Syndrome Association USA Residential Providers Conference! They’re looking forward to connecting with residential providers and others across the PWS community throughout the conference.

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.

This weekend marked Chromosome 8p Awareness Day, and we're proud to recognize the individuals, families, advocates, and researchers working to raise awareness and support the Chromosome 8p community.

In partnership with
Project 8p, a rare chromosome 8p disorder TREND developed a Community Voice Report to better understand the lived experiences, challenges, and priorities of individuals and families affected by Chromosome 8p. The report reflects the community's voice and highlights opportunities to improve research, care, and support.



To learn more about TREND Community’s work in rare diseases or to read the full CVR, visit our website: https://rebrand.ly/14bg4f6

Today is World Sjögren’s Day. 💙 TREND Community is proud to partner with Sjögren Europe and support the global Sjögren’s community by helping amplify the voices of people living with this complex autoimmune disease.
Today is also a reminder that no one should have to navigate Sjögren’s alone. If you haven't already, join Sjögren Europe for today's World Sjögren’s Day webinar, "Awareness and Unmet Needs from the Clinician and Patient Perspective," to hear important conversations about the patient experience and the work still needed to improve care and awareness.


To learn more about TREND Community’s work in Sjogren’s Visit our website at https://rebrand.ly/14bg4f6

YOU. ARE. NOT. ALONE. 💙

The Sjögren Europe team wishes you all a meaningful World Sjögren’s Day ⭐️

We know that too many of you still feel unheard, misunderstood or dismissed.

Today, we raise our voices.

Tomorrow, and every day after, we’ll continue to stand beside you, advocate for you, and fight to ensure every patient is heard.

Join us for today by registering for our webinar on ‘Awareness and unmet needs from the clinician and patient perspective’ !

👉 Register here: https://urls.fr/H2WM08

Date: 23 July 2026
Time: 17:00 CET

TOGETHER WE ARE STRONGER

💚 July is Juvenile Arthritis Awareness Month.

At TREND Community, we're proud to support the juvenile arthritis community and help amplify the voices of children, families, and caregivers.

This bingo card from the Arthritis Foundation highlights some of the everyday experiences many children and families living with juvenile arthritis face, bringing visibility to challenges that often go unseen.

Learn more and help spread awareness: https://arthr.org/4428vkM

July is Juvenile Arthritis Awareness Month. 💚

No one expects long drives to see a doctor, missing school or feeling left out to end up on a child's bingo card. But for many families living with juvenile arthritis, these experiences are all too familiar.

Take a look at our JA bingo Card.

💬 If your family lives with JA, tell us which square hits closest to home — or share one we missed.
📲 If you don’t live with JA, you may be surprised by what you see. Take a moment to learn more about JA and share this post to help raise awareness that kids get arthritis, too.

Because awareness starts with real stories. 💚 https://arthr.org/4oR5IEo

We’re proud to share a new one-pager developed in collaboration with Pwn4Pwn titled What’s TRENDing: Narcolepsy and Pregnancy!

Together, we’re bringing forward pregnancy experiences among individuals living with narcolepsy, using registry data to better understand real-world challenges, decisions, and outcomes.
By elevating patient voices, this work aims to deepen understanding and help inform more thoughtful care and research.

To read the one-pager and learn more about TREND's work in narcolepsy, please visit the Real-World Evidence section of our website:

TREND Community | Turning Anecdotes Into Evidence™ We’re a digital health analytics company that turns the conversations of rare, chronic, and emerging disease communities into actionable insights.