Take ACTion Now!
There’s a role for everyone in advancing clinical trials for equity in sarcoidosis. You can start with the steps below.
Support the Ignore No More: ACTe Now! Campaign in the following ways:
- Take the ACTe Now! Patient Survey to share your experience with sarcoidosis, as well as your knowledge and perspective on clinical trials and the role it plays in advancing treatment for sarcoidosis patients. All respondents are eligible to enter a raffle to win a free iPad Air upon completion of the survey. (Criteria for participation: 18+ years, Black or African American, resides in the U.S.) If not eligible, share the survey with others who may be interested in supporting this important initiative.
- Join FSR’s Patient Registry to provide information on your personal experiences with sarcoidosis. This opportunity is open to all sarcoidosis patients and care partners. It’s a great way to get involved in research to improve care and treatment for sarcoidosis patients.
- Use the ACTe Now! Campaign Social Media Toolkit for educational graphics and sample posts to share on your social media channels.
- Download and share the Ignore No More: ACTe Now! infographic with your personal and professional networks and on social media.
- Book a speaker. Have a support group, organization meeting, or healthcare institution event, where you’d like our Committee Members to speak? Contact us!
- Follow FSR on social media to stay connected and share important information (@stopsarcoidosis on Instagram, Facebook, Twitter, and LinkedIn).
- Learn about current clinical trials opportunities for sarcoidosis patients. Search this directory to find a trial or research opportunity that works for you. Sign up to receive notification when sarcoidosis clinical trials become available. Learn more.
- Raise Awareness for Sarcoidosis. Learn more.
- Join the FSR community to receive our monthly newsletter and stay up to date on research, programs and more!
- Become a volunteer advocate, local advocate, peer mentor advocate or patient navigator. FSR has a vibrant patient advocacy program. Through this program you can find the right volunteer opportunity for your schedule. Learn more.
- Volunteer as a support group or community outreach leader in support of an FSR Global Sarcoidosis Clinic Alliance Member. Learn more here.
If you are a physician or a provider:
- Be informed so you can provide quality care. Stay up to update on emerging research on disparities in care and treatment among sarcoidosis patients.
- Stay informed of ongoing and upcoming clinical trials and research opportunities so you can share them with all your patients. Research shows even groups underrepresented in clinical trials are more likely to participate when asked.
- Share the FSR Patient Survey for Black Americans with Sarcoidosis with your patients who may be eligible to participate.
- Be an advocate for your patients. Help improve the quality of provider/patient communication by partnering with your patients. Ask about their lives and any challenges they may have understanding and following your treatment plan.
- Everyone has biases, so it’s important to be self-aware and take a personal inventory to ensure you are identifying and addressing biases to better serve patients. Project Implicit at Harvard University has an implicit association assessment (IAT) to measure implicit bias. Learn more here.
- Join the FSR Global Sarcoidosis Clinic Alliance. Click here to learn about the benefits and how you can join.