TREND Community

02/16/2026

Our CEO and Co-Founder, Maria Picone will be attending the Running for Research 5K in Gainesville, FL on March 14, 2026. This 5K, funded by the Miller’s Kids Fund, supports two clinical trials advancing PWS research. If you’ll be attending and want to meet up, please reach out!

To donate or learn more, visit: https://lnkd.in/eYKuKkYz

02/13/2026

Our TREND Community Office Hours are happening today from 12:00–2:00 PM ET. Join Maria Picone and the TREND team for live Q&A, updates on the TEMPO Phase 3 clinical trial, and open community conversation.

Join us:

Join us on February 13

02/11/2026

We’re kicking off our first TREND Community Office Hours of the year on Friday, February 13 from 12:00–2:00 PM ET, and we’d love for you to join us for a live conversation with Maria Picone and the TREND team.

If your loved one with Prader-Willi Syndrome (PWS) experiences excessive daytime sleepiness or behavioral challenges, this session will focus on the TEMPO Phase 3 clinical trial, exploring pitolisant for people with PWS and excessive daytime sleepiness. You’ll have the opportunity to ask questions, learn more about the study, and get support connecting with potential clinical trial sites.

RSVP here:

Join us on February 13

02/10/2026

We’re excited to share that our CEO and Co-Founder, Maria Picone, will be in Washington, DC later this month for Rare Disease Day at the National Institutes of Health. Being together with the rare disease community is always meaningful to us, and we’d love to connect while we’re there. If you’ll be attending and want to meet up, please reach out!

02/06/2026

February is Rare Disease Month, and it highlights why patient voices matter so much. At TREND Community, rare disease isn’t a moment or a campaign, it’s our mission every day. We listen to lived experiences and work to turn them into insights that drive real understanding and impact.

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:

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