This website was created by a group of patients who have ROS1-driven cancers. The group currently has over 120 patients from over 12 countries–not bad for a rare cancer! We call ourselves “ROS1ders.”
This site is a place where we can collect and share information about ROS1-driven cancers. As we add more content, you will be able to find ROS1 clinical trials, journal articles, ways to get tested for ROS1-driven cancers, current treatment options, resources to help you find ROS1 expert oncologists and targeted therapies, hints for coping with side effects of common targeted therapies, and blogs written by patients who have ROS1-driven cancers.
If you or someone you know has a ROS1-driven cancer, please send us a message on our Contact Us page so we can connect.
We have a closed Facebook group titled “ROS1 Positive (ROS1+) Cancer” for ROS1 patients and caregivers. If you would like to join the group, please fill out this form:
If you have any questions about the Facebook group, send a private FB message to administrators Tori Tomalia, Janet Freeman-Daily, or Lisa Goldman.
Smart Patients has a ROS1 Cancer community. Relevant discussions are tagged “ROS1” to make them easy to find. Janet Freeman-Daily moderates it.
The Bonnie J. Addario Lung Cancer Foundation has partnered with us to develop research programs for ROS1-driven cancers of all types. Their ROS1 webpage has a link to research study they created together with us. If you are a ROS1 patient, or a carer who speaks for a ROS1 patient, please click here to access the ALCF ROS1 survey.
You can download and print fliers to share information about this website, the ROS1 patient group, and our patient-driven research below. We are in the process of translating the flier into other languages:
Last updated 2016-12-10