{"title":"The ROS1ders","summary":"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.","body":"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.\n\n## What they offer\n\n- A private online group for ROS1-positive patients and immediate caregivers worldwide, plus a separate group on end of life, hospice and grief.\n- Zoom meetups twice a month, usually with a short education topic and open discussion.\n- A list of ROS1 physicians, including some who offer remote second opinions.\n- Plain-language pages on ROS1 treatments, side effects, clinical trials and managing finances.\n- Patient-driven research: members donate tumor samples for cancer models, plus seed grants and a real-world data project.\n- A newsletter about twice a year, and an annual summit.\n\n## How to join and what it costs\n\nFill 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).\n\n## How it fits with other groups here\n\nThe 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.\n\n## Questions I would ask\n\n- Which ROS1 physician near me offers second opinions, and is remote an option?\n- When is the next meetup in my time zone?\n- How does tumor sample donation work, and what would I need from my care team?\n- What trials are other members looking at right now?\n\n## Contacts\n\n- Website: [theros1ders.org](https://www.theros1ders.org/)\n- Community and join form: [theros1ders.org/connect-to-our-community](https://www.theros1ders.org/connect-to-our-community)\n- Email: info@theros1ders.org\n- Meetups email: meetups1@theros1ders.org\n- Phone: +1 (916) 382-8544","topics":["getting-started","expert-support"],"capabilities":["patient-support"],"organizationType":"nonprofit","services":["peer-support","patient-education","advocacy"],"communityFocus":["ROS1-positive cancer","ROS1-positive lung cancer","Caregivers"],"sources":[{"id":"about","label":"About The ROS1ders","url":"https://www.theros1ders.org/about-the-ros1ders","publisher":"The ROS1ders","checkedAt":"2026-10-22","supports":"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.","type":"official"},{"id":"community","label":"Connect with our community","url":"https://www.theros1ders.org/connect-to-our-community","publisher":"The ROS1ders","checkedAt":"2026-10-22","supports":"Private Facebook groups (join form then request), Transitions group, twice-monthly Zoom meetups, newsletter about twice a year.","type":"official"},{"id":"experts","label":"Find a ROS1 Physician","url":"https://www.theros1ders.org/find-a-ros1-expert","publisher":"The ROS1ders","checkedAt":"2026-10-22","supports":"List of ROS1 clinician-researchers and clinicians; marks those offering remote second opinions.","type":"official"},{"id":"home","label":"The ROS1ders home page","url":"https://www.theros1ders.org/","publisher":"The ROS1ders","checkedAt":"2026-10-22","supports":"Contact email and phone; 2026 summit; Global ROS1 Initiative, Cancer Model Project, real-world data and seed grant programs.","type":"official"},{"id":"propublica","label":"Ros1ders Inc nonprofit record","url":"https://projects.propublica.org/nonprofits/organizations/834490547","publisher":"ProPublica Nonprofit Explorer","checkedAt":"2026-10-22","supports":"Ros1ders Inc, Sacramento CA, EIN 83-4490547, 501(c)(3).","type":"research"}],"applicability":"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.","limitations":"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.","disclosure":{"type":"none","text":"I have no financial or business relationship with this organization."},"reviewedAt":"2026-10-22","relatedIds":["656030c7-047a-40e9-b47b-14b19f3fd2bd"],"assetIds":["e2a5b876-c8e2-46fa-89c6-c3d7cabdce12","0bc9b4fc-fcb8-46b4-84cc-d0bdf8e6d964"],"relatedX":[],"website":"https://www.theros1ders.org/","serviceStatus":"available","access":{"label":"Connect with the community","url":"https://www.theros1ders.org/connect-to-our-community"},"facts":[{"label":"Who it serves","value":"People with ROS1-positive cancer of any type and their caregivers, worldwide.","sourceIds":["about","community"]},{"label":"Legal status","value":"501(c)(3) nonprofit (The ROS1ders, Inc.), EIN 83-4490547, volunteer-run.","sourceIds":["about","propublica"]},{"label":"Meetups","value":"Zoom meetups twice a month (second Tuesday and fourth Monday), as of October 2026.","sourceIds":["community"]},{"label":"Expert access","value":"Publishes a list of ROS1 physicians, noting who offers remote second opinions.","sourceIds":["experts"]}],"id":"52d66337-9687-4a7a-9364-ca650f9f9d00","kind":"company","slug":"the-ros1ders","revision":"51a876be-c415-4954-bd12-138b17ca19a5","canonicalUrl":"https://kevinwimer.com/companies/the-ros1ders/","publishedAt":"2026-10-25T03:12:58.825Z","updatedAt":"2026-10-25T03:12:58.825Z","previewOnly":false,"logoAssetId":"e2a5b876-c8e2-46fa-89c6-c3d7cabdce12","logoBackground":"dark","logoSource":{"pageUrl":"https://www.theros1ders.org/","assetUrl":"https://static.wixstatic.com/media/bef3b5_f01af5b55f82411082ef3a54e0e794e9~mv2.png/v1/crop/x_242,y_0,w_17122,h_3792/fill/w_424,h_94,al_c,q_85,usm_0.66_1.00_0.01,enc_avif,quality_auto/ROS1ders-Primary-White-Green.png","checkedAt":"2026-10-25T02:37:27.363Z"},"shareImageAssetId":"0bc9b4fc-fcb8-46b4-84cc-d0bdf8e6d964"}