The ROS1ders

The ROS1ders is a global group of patients and caregivers living with ROS1-positive cancer. A few ROS1-positive lung cancer patients started it in 2015, and it became a 501(c)(3) in 2019. It's run by volunteers, most of them patients or caregivers.

What they offer

• A private online group for ROS1-positive patients and immediate caregivers worldwide, plus a separate group on end of life, hospice and grief.
• Zoom meetups twice a month, usually with a short education topic and open discussion.
• A list of ROS1 physicians, including some who offer remote second opinions.
• Plain-language pages on ROS1 treatments, side effects, clinical trials and managing finances.
• Patient-driven research: members donate tumor samples for cancer models, plus seed grants and a real-world data project.
• A newsletter about twice a year, and an annual summit.

How to join and what it costs

Fill out the form on the community page, then request to join the private group. For meetups, send a request and they email you a Zoom link. I didn't see a fee listed (checked October 2026).

How it fits with other groups here

The ROS1ders is biomarker-specific. For ALK, see ALK Positive. For general lung cancer support, see LUNGevity and GO2 for Lung Cancer. More in my find support and second opinion guides.

Questions I would ask

• Which ROS1 physician near me offers second opinions, and is remote an option?
• When is the next meetup in my time zone?
• How does tumor sample donation work, and what would I need from my care team?
• What trials are other members looking at right now?

Contacts

• Website: theros1ders.org
• Community and join form: theros1ders.org/connect-to-our-community
• Email: info@theros1ders.org
• Meetups email: meetups1@theros1ders.org
• Phone: +1 (916) 382-8544