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The SARC Research Advocacy Council (RAC) engage and train patient advocates to become “research advocates” so they can provide invaluable feedback on SARC initiatives and add their voice to the development and evaluation of clinical trials.
Established in 2019, the council members represent multiple sarcoma foundations as well as community leaders.
Meet our current members
The SARC Research Advocacy Council is modeled on the National Cancer Institute’s program to engage and train patient advocates to become “research advocates” across four key functions: advise, design, review, and disseminate.
Members meet with sarcoma investigators and have the opportunity to “embed” in SARC’s current and planned clinical trials.
Since 2003, SARC has completed 22 clinical trials with four more underway.
The Council is seeking motivated individuals who are passionate about helping to support and drive sarcoma research advancements.
We meet quarterly via Zoom and once a year in person with sarcoma investigators. This collaborative effort ensures that SARC is leading programming that can best serve sarcoma patients and their families.
Please contact Caralynn Hampson, SARC Project Coordinator, to learn more.
“I am thankful for the SARC Research Advocacy Council because it gives us an opportunity to be involved in the clinical trial process and helps bridge the gap between the patient groups we represent and the institutional/medical groups that serve sarcoma patients.”
The RAC helped guide the development of the new SARC Sarcoma Centers Registry – a worldwide resource designed to help patients find sarcoma treatment centers. Members worked together with SARC to advise on what type of information is important to patients and their caregivers when seeking treatment.The Registry will help sarcoma patient decision-making and provide a much needed resource for sarcoma patients, caregivers, and clinical communities across the globe.
The Council also serves as a think tank for the educational content on SARC social media – empowering patients with lay-accessible information about sarcoma biology and treatments.
“I got involved [in patient advocacy] because I’ve been passionate about cancer research ever since I was diagnosed with cancer when I was 11-years old. So now as a 12-year survivor the SARC Research Advocacy Council allows me to:
Follow us on Instagram and Facebook to find lay-accessible information about sarcoma biology and treatment.
Listen to the SARC Talk podcast that explores all things related to sarcoma.
Read patient stories and news about the Research Advocacy Council.
100% of SARC donations go directly to support program initiatives like the Research Advisory Council. Help us continue this program.