The ROS1ders

05/25/2026

What makes the PRIME Summit different?

The ROS1ders PRIME Summit is more than a conference. It is a gathering created by and for a rare cancer community that understands how much it matters to have access to accurate information, expert perspectives, and people who truly “get it.”

At the Summit, attendees can expect opportunities to:

• Learn from researchers and clinicians working in ROS1+ cancer
• Hear updates about treatment, resistance, research, and clinical trials
• Connect with other patients and caregivers
• Ask questions in a supportive environment
• Strengthen the relationships that help move research forward

For many people, the most powerful part of the Summit is realizing they are not navigating ROS1+ cancer alone.

Registration is open:
https://ros1ders.regfox.com/prime-summit-2026

05/19/2026

The countdown to the ROS1ders PRIME Summit 2026 begins!

This August, The ROS1ders community will gather in the Boston area for three days of connection, learning, advocacy, and hope.

The PRIME Summit is designed for people living with ROS1+ cancer, caregivers, researchers, clinicians, advocates, and partners who want to better understand the science, the lived experience, and the future of ROS1+ research.

Whether this would be your first ROS1ders event or you have been part of the community for years, you can expect a Summit built around shared learning, meaningful conversations, and the power of being in the room together.

Registration is open now:
https://ros1ders.regfox.com/prime-summit-2026

Early Bird pricing is available through July 1.

04/11/2026

At the 2026 Texas Lung Conference with the first-ever table for The ROS1ders, great networking with physicans, amazing panels, and a fun AI photo booth!

12/18/2025

Navigating a ROS1+ cancer diagnosis can feel overwhelming. That’s why we created a new Patient Education Program page — a place to find clear, trusted information and community-centered support, all in one spot.

On this page, patients and caregivers can find:
• An overview of ROS1+ cancer and what makes it unique
• Information about biomarker testing and why it matters
• Guidance on treatment options and emerging research
• Links to patient stories and educational content
• Resources to help patients feel more informed, empowered, and connected

This resource reflects what our community has asked for: education grounded in science, shaped by lived experience, and accessible at every stage of the journey.

We’re deeply grateful to Nuvalent and The Patient Story for supporting our Patient Education Program and helping make this resource possible.

🔗 Explore the new page:
https://www.theros1ders.org/copy-of-guide-for-patients

Together, we’re building knowledge, confidence, and connection for the ROS1 community.

12/16/2025

Because of YOU — ROS1+ research continues to move forward.

The ROS1ders recently announced the 2025 ROS1+ Cancer Innovation Award, supporting bold, high-impact research led by Dr. Monika Davare (OHSU) and Dr. Alexander Drilon (MSKCC). This work deepens our understanding of ROS1 cancers and helps pave the way for future therapies.

These seed grants are funded entirely by our community — patients, families, and supporters who believe rare cancers deserve focused, innovative science.

As we wrap up the year, we’re grateful for every donation, share, and message of support that fuels progress.

Learn more: https://www.prlog.org/13114125-the-ros1ders-announces-recipients-of-the-2025-ros1-cancer-innovation-award.html

Help us fund more research with a donation: https://www.theros1ders.org/donate

11/13/2025

Our co-founder and president Janet Freeman-Daily be speaking in a webinar about ROS1+ lung cancer on November 17. Registration is FREE and available here:
https://floridasocietyofclinicaloncologyjune152017.growthzoneapp.com/ap/Events/Register/8EFBOdZCOCRC7
Hope you can join us!

10/10/2025

🌟 New Resource for Patients 🌟

We’re excited to share that Elevate Lung Cancer Care
is now live!

This unbranded educational site was created in collaboration with the Nuvalent Patient Advisory Council (NPAC)—including 14 ROS1+ and ALK+ NSCLC patients and care partners. Every topic and resource was shaped directly by the council to address unmet educational needs and spark stronger conversations between patients and their healthcare teams.

🔗 Explore the ROS1+ page here: https://elevatelungcancercare.com/ROS1

✨ What you’ll find:

Real photos of patients and families from our community who volunteered to be part of this campaign

Downloadable Doctor Discussion Guide and Survivorship Guide, developed with input from multiple advocacy groups

Key considerations for patients, from setting treatment goals to getting second opinions

📌 Coming soon: patient stories, a Medicare Part D guide, and resources to help interpret clinical trial data in plain language.

We’re proud that members of our ROS1+ community helped bring this site to life, and we hope it will become a valuable tool for patients everywhere.

08/30/2025

In 2015, The ROS1ders consisted of a very small group of patients trying to figure out how to improve outcomes for patients with our rare biomarker. We turned to Bonnie Addario for help and she enthusiastically embraced us. Read more at the link below.

In 2015, The ROS1ders consisted of a very small group of patients trying to figure out how to improve outcomes for patients with our rare biomarker. We turned to Bonnie Addario for help and she enthusiastically embraced us. With Bonnie’s help (and the help of her organizations ALCF and ALCMI), we ...

08/22/2025

https://www.theros1ders.org/post/jing-liu-she-s-a-1der

06/24/2025

Today's Nuvalent press release describes the most recent safety and efficacy data from the ARROS-1 study of zidesamtinib (NVL-520) in patients with advanced ROS1+ NSCLC. It also announces progress and provides updates on zidesamtinib’s development strategy and timelines.

The Phase 2 portion of this trial remains open for tyrosine kinase inhibitor (TKI) treatment-naïve patients and patients with other ROS1+ solid tumors who have been previously treated with TKIs or other therapies.

Aligned with FDA on NDA submission strategy for TKI pre-treated patients with advanced ROS1-positive NSCLC and participation in Real-Time Oncology Review; the company plans to initiate a rolling...