# The ROS1ders

Volunteer-run nonprofit for people with ROS1-positive cancer and their caregivers: private online groups, twice-monthly Zoom meetups, a ROS1 physician list and patient-driven research.

Author: Kevin Wimer
Canonical URL: https://kevinwimer.com/companies/the-ros1ders/
Stable ID: 52d66337-9687-4a7a-9364-ca650f9f9d00
Revision: 51a876be-c415-4954-bd12-138b17ca19a5
Published: 2026-10-25T03:12:58.825Z
Updated: 2026-10-25T03:12:58.825Z
Reviewed: 2026-10-22

## Who this is for
For patients and caregivers looking for community, education or help navigating care. Inclusion is not a recommendation or a finding that this group is right for your situation.

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](/companies/alk-positive/). For general lung cancer support, see [LUNGevity](/companies/lungevity/) and [GO2 for Lung Cancer](/companies/go2-for-lung-cancer/). More in my [find support](/resources/find-support/) and [second opinion](/resources/get-a-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](https://www.theros1ders.org/)
- Community and join form: [theros1ders.org/connect-to-our-community](https://www.theros1ders.org/connect-to-our-community)
- Email: info@theros1ders.org
- Meetups email: meetups1@theros1ders.org
- Phone: +1 (916) 382-8544

## Limits and context
Program details are reported by the group unless noted, as of October 2026. Confirm current programs, eligibility and any costs directly with the group. A community group does not give medical advice.

## Relationships and disclosures
I have no financial or business relationship with this organization.

## Sources
- [About The ROS1ders](https://www.theros1ders.org/about-the-ros1ders) — The ROS1ders; official; checked 2026-10-22; Founded 2015 by ROS1+ lung cancer patients; incorporated as The ROS1ders, Inc., a 501(c)(3) run by volunteers, in 2019; community, education and research programs.
- [Connect with our community](https://www.theros1ders.org/connect-to-our-community) — The ROS1ders; official; checked 2026-10-22; Private Facebook groups (join form then request), Transitions group, twice-monthly Zoom meetups, newsletter about twice a year.
- [Find a ROS1 Physician](https://www.theros1ders.org/find-a-ros1-expert) — The ROS1ders; official; checked 2026-10-22; List of ROS1 clinician-researchers and clinicians; marks those offering remote second opinions.
- [The ROS1ders home page](https://www.theros1ders.org/) — The ROS1ders; official; checked 2026-10-22; Contact email and phone; 2026 summit; Global ROS1 Initiative, Cancer Model Project, real-world data and seed grant programs.
- [Ros1ders Inc nonprofit record](https://projects.propublica.org/nonprofits/organizations/834490547) — ProPublica Nonprofit Explorer; research; checked 2026-10-22; Ros1ders Inc, Sacramento CA, EIN 83-4490547, 501(c)(3).

Organization website: https://www.theros1ders.org/

Organization type: Nonprofit

Services: Connect with peers, Patient education, Patient advocacy

Community focus: ROS1-positive cancer, ROS1-positive lung cancer, Caregivers

Information/access: [Connect with the community](https://www.theros1ders.org/connect-to-our-community)

Service status: available

## Company facts
- **Who it serves:** People with ROS1-positive cancer of any type and their caregivers, worldwide. (Sources: about, community)
- **Legal status:** 501(c)(3) nonprofit (The ROS1ders, Inc.), EIN 83-4490547, volunteer-run. (Sources: about, propublica)
- **Meetups:** Zoom meetups twice a month (second Tuesday and fourth Monday), as of October 2026. (Sources: community)
- **Expert access:** Publishes a list of ROS1 physicians, noting who offers remote second opinions. (Sources: experts)

Topics: getting-started, expert-support
Capabilities: patient-support

Related record IDs: 656030c7-047a-40e9-b47b-14b19f3fd2bd

Follow Kevin on X: https://x.com/kevinace

Educational information, not an individualized treatment recommendation.