The ROS1ders

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08/16/2026

Connection. Education. Advocacy. That's what The ROS1ders came together for this week, and our second PRIME Summit delivered on all three 🎉

This organization started with just five patients sitting around a hotel bar, trying to make sense of a diagnosis nobody around them understood. Fast forward to 2026, we filled a room with over a hundred ROS1ders, physicians, researchers, and pharmaceutical partners — the people who lift our spirits and help us stretch the boundaries of survival every single day.

Whether it was a new connection made, a question finally answered, or just the relief of being understood, we hope everyone walked away with something to carry home.

Thank you for making this community what it is 🫶✨

08/14/2026

"Individually we are one drop. Together we are an ocean."

That's how Dr. Jessica Lin of Mass General Hospital and Harvard Medical School opened today's keynote — and it set the tone for everything that followed.

Over a decade ago, a ROS1+ diagnosis came with almost nothing to hold onto. Then in 2016, Crizotinib became the first-ever targeted therapy approved for ROS1+ lung cancer — a true turning point. Since then, the field hasn't slowed down: Entrectinib followed in 2019, Repotrectinib in 2023, and a pipeline of next-generation inhibitors is now in active development, built specifically to outsmart resistance and keep patients on treatment longer. What used to be a diagnosis with almost no options is now one of the fastest-moving corners of precision oncology.

Dr. Lin walked us through exactly how we got here — and gave us a real, honest look at what's coming next. For a community that's spent years searching for answers, hearing it straight from someone at the center of that research was extremely powerful.

She was later joined by Dr. Alice Shaw, of Dana-Farber Cancer Institute, and Dr. Misako Nagasaka, of UC Irvine, for our long-awaited physician panel. They opened the floor to questions on clinical trials, drug resistance, upcoming therapies and so much more.

Our small but mighty ROS1 community is forever grateful to researchers like these three. Thank you for giving us the gift of more time. There's nothing quite like knowing we have experts this brilliant and dedicated in our corner 💫✨

08/13/2026

Our PRIME Summit has officially kicked off today in Boston, MA 🎉✨

From August 13–15, patients, caregivers, advocates, researchers, and clinicians from across the ROS1+ community are gathering for three days of connection, learning, and hope.

ROS1+ cancer is rare — found in just 1–2% of lung cancers — but our community is anything but small. For those living with this diagnosis, this conference is a rare chance to be in a room full of people who get it: the questions, the uncertainty, the hard decisions, and the hope that comes with a ROS1+ diagnosis.

This year's program includes updates on emerging ROS1 research, real talk on treatment and advocacy, and space for the kind of connection that only happens when this community comes together in person.
Whether you're joining us in Boston or cheering us on from afar — welcome to The ROS1ders’ PRIME Summit 2026! 💚

08/04/2026

Can’t Make It to Boston?
Join the 2026 ROS1ders PRIME Summit Virtually!

We know that not everyone in the ROS1+ community is able to travel. Whether you’re living outside the United States, managing health challenges, facing financial barriers, or simply can’t make the trip this year, we want you to be part of the learning.

For the first time, we’re offering a Virtual Attendance option for the 2026 ROS1ders PRIME Summit.

Virtual Registration: $30

Your registration includes:

💻 Live Zoom access to our educational sessions*
📝 The opportunity to submit questions during presentations through our event Q&A platform
🧬 Current, expert-led education on ROS1-positive lung cancer from wherever you are

*Virtual attendees will have access to all educational sessions except those designated as Patient-Only and/or Caregiver-Only, and Wellness sessions.

Why Attend In Person?

The PRIME Summit was designed as an in-person experience, bringing together patients, caregivers, researchers, physicians, advocates, and industry partners to learn from one another through both the formal program and countless conversations in between.

In-person attendees also enjoy:

* Meeting other ROS1ders from around the world
* Conversations with fellow patients, caregivers, physicians, researchers, and sponsors throughout the conference
* Networking during meals and social events
* Wellness activities and affinity groups
* The full sense of community that makes the PRIME Summit so special

If traveling to Boston is possible for you, we strongly encourage attending in person. In-person registration is available here: https://ros1ders.regfox.com/prime-summit-2026

If it isn’t, we’re excited to offer virtual participation so that distance or health limitations don’t prevent you from benefiting from the educational sessions.

No matter how you join us, we’re looking forward to learning together.

Virtual Registration: $30
Sign up to attend virtually here: https://ros1ders.regfox.com/prime-summit-2026-virtual

06/24/2026

🌟 Keynote Speaker Announcement! 🌟

The ROS1ders are thrilled to announce that Dr. Jessica Lin will be the keynote speaker at the 2026 ROS1ders PRIME Summit in Boston!

Dr. Lin is a thoracic oncologist and clinical investigator at Mass General Cancer Center. Her work focuses on targeted therapies, clinical trials, drug resistance, biomarkers, and molecularly defined lung cancers — including ROS1+ cancer.

The PRIME Summit — Patient and Researcher Interaction for Mutual Education — brings together ROS1+ cancer patients, caregivers, researchers, clinicians, and advocates to learn from one another and help move ROS1 research forward.

Dr. Lin will give the keynote address and also appear on the physician panel, where she and other ROS1+ experts will discuss important questions for ROS1+ cancer patients, including questions from attendees at the Summit.

If you are living with ROS1+ cancer, caring for someone who is, researching ROS1, or supporting this community, we hope you will join us August 13-15th in Boston.

✨ Early bird registration pricing is available through the end of June.
Register here: https://ros1ders.regfox.com/prime-summit-2026

✈️ Travel scholarship applications for up to $500 in travel costs are open through June 25. Recipients will be notified by June 30. Scholarship recipients must attend the conference and stay in the co .

Apply here: https://form.jotform.com/CalmaCompany/travel-scholarship-application

06/17/2026

Science is moving. Let’s understand it together.

One of the goals of the PRIME Summit is to help our community better understand the science behind ROS1+ cancer.

Research can feel overwhelming when it includes gene fusions, resistance mutations, next-generation therapies, brain metastases, clinical trials, and lab-based discoveries. At the Summit, we work to bridge that gap by bringing researchers, clinicians, and patients into shared conversation.

When patients and caregivers understand the science, they are better prepared to ask informed questions, advocate for themselves, and contribute to research priorities that matter.

Join us this August:
https://ros1ders.regfox.com/prime-summit-2026

Early Bird pricing is available through July 1.

06/10/2026

Patients and caregivers: this Summit is for you.

Living with ROS1+ cancer can mean learning a new language of scans, mutations, targeted therapies, side effects, resistance, clinical trials, and treatment decisions. Caregivers often carry that learning too, while also providing emotional and practical support.

At the PRIME Summit, we create space for both patients and caregivers to learn, connect, and ask questions.

You can expect sessions that help make complex science more understandable, conversations that recognize the emotional weight of living with cancer, and opportunities to meet others who share similar experiences.

Patients and caregivers are welcome to attend.

Register here:
https://ros1ders.regfox.com/prime-summit-2026

06/05/2026

Worth checking out this the ElevateLungCancerCare.com hub - developed by Nuvalent in collaboration with The ROS1ders LUNGevity Foundation, GO2 for Lung Cancer, LCFA: Lung Cancer Foundation of America, Lung Cancer Research Foundation and International Association for the Study of Lung Cancer STARS.

Full of great resources👉https://elevatelungcancercare.com/

06/03/2026

What makes the PRIME Summit different?

The ROS1ders PRIME Summit is not just 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

05/25/2026

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

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Telephone

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Website

http://theros1ders.org/

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