RETpositive

RETpositive is a patient-driven 501(c)(3) nonprofit for people with RET-positive cancer, which is caused by a mutation or abnormal rearrangement of the RET gene. RET changes show up most often in lung cancer and several thyroid cancers, and in an estimated 1 to 2 percent of other cancers, including ovarian, pancreatic, salivary, breast and colorectal. The group is open to anyone with a RET-driven cancer, whatever the tumor type.

What they offer

• Private Facebook support groups for patients and caregivers: RETpositive, for any RET-driven cancer, and LUNGevity RET Renegades for lung cancer.
• Education: videos, webinars, patient stories and pages on treatments, resources and RET clinical trials.
• Research funding. RETpositive says 100 percent of donations go directly to research.
• A quarterly newsletter on RET trials, therapies and stories.
• A collaboration with 23andMe and other lung cancer groups on the Lung Cancer Genetics Study, open to U.S. adults who have had lung cancer.

How to join and what it costs

Ask to join the private Facebook group that fits you, or sign up for the newsletter on its site. I did not see any fee to join (checked October 24, 2026).

How it fits with other groups here

RETpositive is one of the biomarker groups, like ALK Positive, EGFR Resisters, The ROS1ders and MET Crusaders. Its lung cancer group runs with LUNGevity. My tumor testing guide covers how biomarkers like RET are found.

Questions I would ask

• Which RET treatments and trials are people in the group discussing for my cancer type?
• What resistance patterns have members seen after a first RET drug?
• Which experts do members see for RET-positive cancer?
• Is there a group for my caregiver?

Contacts

• Website: retpositive.org