TREND Community

03/16/2026

We’re proud to support our partners at the Fabry Support & Information Group (FSIG) for their Virtual Fabry Awareness Fun Run & Walk this April in honor of Fabry Awareness Month. 💙 Communities across the country will be walking and running to raise awareness for people living with Fabry disease. Want to show your support? You can also purchase the official 2026 Fabry Walk t-shirt — with proceeds supporting FSIG programs for patients and families.

🗓 T-shirt orders close Monday, March 23.
Learn more and get involved:
🔗 https://www.fabry.org/virtual-fun-run---walk
🔗https://pogo.undergroundshirts.com/collections/fabry-walk-a-thon-tees-2026

Join our Virtual Fun Run & Walk to support women affected by Fabry. Register now to make a difference!

03/09/2026

We’re looking forward to connecting with the community at several upcoming events this month.
Our CEO and Co-Founder, Maria Picone, will be attending the RFR Annual Gainesville Fun Run 5K in Gainesville, FL on March 14, followed by the Clint Hurdle Hot Stove event in Bradenton, FL on March 21. Later in the month, Maria will be joined by our COO, Lauren Dougherty, at Patients as Partners in Boston, MA from March 24–26. We’re always grateful for the opportunity to connect with families, advocates, researchers, and partners working across the PWS and rare disease communities.

If you’ll be at any of these events, we’d love to connect!

03/02/2026

A meaningful time in DC as our CEO and Co-Founder, Maria Picone, stood alongside advocates from across the country at Rare Disease Week. The collaboration and shared commitment were truly inspiring! So special to see our partner, Prader-Willi Syndrome Association USA, together with so many leaders supporting individuals and families in the PWS community. 💜

PWS represented at Rare Disease Week on Capitol Hill💜

Advocates, parents, individuals living with Prader-Willi syndrome, and dedicated industry partners are showing up in Washington, D.C. this week to share their stories, educate lawmakers, and ensure the PWS community’s voice is heard where decisions are made. The PWS community is so strong, and together, we are making an incredible impact!

Learn more about Everylife Foundation's Rare Disease Week: https://everylifefoundation.org/rare-advocates/rare-disease-week/

02/23/2026

Missed our recent webinar Shedding Light on Sleep Disorders in Prader-Willi Syndrome or want to revisit the conversation? The full recording is now available. Thank you to our speakers and everyone who joined for an important discussion on sleep challenges, lived experiences, and care considerations in PWS!

Watch the recording here:

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