The ROS1ders (US based, global reach)
The ROS1ders is a global group of patients and caregivers living with ROS1+ cancer. It seeks to improve outcomes for all ROS1+ cancers through community, education, and research.
It was founded in 2015 by a small group of ROS1+ lung cancer patients. It is now the largest collection of ROS1+ patients and caregivers in the world, with hundreds of members from dozens of countries.
Initially, the group partnered with other nonprofits to drive research into ROS1+ cancers of all types. In 2019, it incorporated and became The ROS1ders, Inc., a 501(c)(3) non-profit corporation run by volunteers, most of whom are patients or caregivers living with ROS1+ cancer.
ROS1ders UK
Hosted online by CRUK, this is a fast-growing charity of patients and carers in the UK, working to improve the prognosis and raise the standards of care for patients diagnosed with ROS1-positive cancer.
From their website:
“Our advocacy promotes critical conversations and actions to ensure our endeavours have a beneficial impact on patients.
“We seek to educate, inform and partner with the relevant parties to help drive the necessary changes to achieve the outcome of our mission.”
The patient’s perspective and experience are paramount in all of our endeavours, whether through participation in clinical trials, influencing the accessibility of subsequent medication treatments, or promoting awareness.”
Website: ROS1 Community
