While Sarcoidosis (SAR-COY-DOE-SIS) may be difficult to pronounce, living with it presents even greater challenges. Too often, individuals only encounter the word ‘Sarcoidosis’ when a loved one is diagnosed with the disease. “Say Sarcoidosis” reminds us of the importance of speaking up about this often-misunderstood condition.
Together, let’s shatter the silence and “Say Sarcoidosis” this April to raise awareness and shine a light on the 1.2 million people living with Sarcoidosis.
Share Your Story
The best way for someone to learn about sarcoidosis is to learn about your experiences. Share your story and guide people to FSR to learn more about how they can support research and our educational programming.
To raise awareness and unite the community during April’s Sarcoidosis Awareness Month, FSR will be hosting a month-long virtual awareness and fundraising challenge! Join us and Say Sarcoidosis!
Attend Events
FSR has put together a variety of educational, wellness, and social engagement programs this month. Connect with other members in the sarcoidosis community, learn from experts, and engage with FSR.
Say Sarcoidosis
Awareness and Fundraising Challenge
Join FSR's Say Sarcoidosis Awareness and Fundraising Challenge this year! Join us in raising $75,000 to support efforts in accelerating research and patient programming this year! Create a Say Sarcoidosis fundraising team and invite your friends and family to join you in raising awareness and fundraising throughout the month.
Now through April 30, 2024, don't miss your chance to get an exclusive Say Sarcoidosis pin by either raising at least $100 or donating $100 for the Say Sarcoidosis Campaign!
#PostInPurple Social Media Challenge
Join the FSR community and #PostInPurple to show support for sarcoidosis awareness! Share a photos on social media during the month of April with the color purple, the internationally-recognized color for sarcoidosis, to show solidarity for those impacted by this disease. Make sure to tag @stopsarcoidosis and use #PostInPurple and #SaySarcoidosis!
Awareness Events
FSR has a full schedule of events coming up, and plenty of opportunities for learning, connecting and joining with others to raise awareness of sarcoidosis!
Virtual Events:
- All month: Say Sarcoidosis Fundraising Challenge
- April 11: LinkedIn Live for Sarcoidosis Awareness
- April 13: World Sarc Day
- April 18: Say Sarcoidosis Community Discussion
- April 25: Using Your Voice with Clinicians and Research Webinar
- April 29: Memorial Monday
- April 30: Advocacy Webinar
In-person Events:
- April 6: Gator Steps for Lung Disease 5K in Gainesville, FL
- April 11: 'Ask a Doc' event in Washington, DC.
- April 13: NIEHS Women's Wellness Conference in Durham, NC
- April 13: Sarcoidosis Walk National Mall in Washington DC
- April 15: Awareness and Spring Vaccines, Walgreens in Alabama
- April 24-27: Sarcoidosis Table at Red's Cafe at the Memorial Hermann-Texas Medical Center
- April 27: MetroHealth Minority Men's Health Conference in Cleveland Heights, OH
- April 27: Sarcoidosis Awareness Month Walk with Cleveland Clinic
- April 27: Temple Health Lung Center Sarcoidosis Awareness Month Walk
FSR Global Sarcoidosis Clinic Alliance (FSR-GSCA) Community Group Events
- April 4: FSR-GSCA Sarcoidosis Community Group Denver at National Jewish Meeting
- April 10: FSR-GSCA Community Group of Oklahoma City at OUHSC
- April 13: FSR-GSCA Community Group of Birmingham at UAB Meeting
- April 20: FSR-GSCA Community Group of DC at Medstar Hospital
- April 25: FSR-GSCA Community Group of Philadelphia at Jefferson Health
- April 30: FSR-GSCA Community Group of Corewell Health East at Corewell Health-Royal Oak, Michigan
- April 30: UF Health Sarcoidosis Support Group
Click here to register for a Community Group event near you.
Sarcoidosis Awareness Toolkits
Our social media kit contains graphics and language to share during the month of April to help raise awareness for sarcoidosis and Step Up for Sarc! Download the toolkit here.
Sarcoidosis Awareness Coloring Sheets
Print out or digitally color our Sarcoidosis Awareness Month coloring sheets and share to help raise awareness for sarcoidosis! Click on each image below to view and download a PDF, or click here to access all pictures.
Download our Sarcoidosis Advocacy and Policy Toolkit and make your voice heard in your community!
Shop to Support Sarcoidosis Awareness!
For a limited time FSR is selling T-shirts to help raise awareness of sarcoidosis among our community! These soft-style shirts will be on sale through April 19, 2024. Proceeds from this fundraiser will support FSR’s sarcoidosis research and patient support initiatives.
Learn About Sarcoidosis
What is Sarcoidosis? Learn about the symptoms and access the resources.
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- FSR On-Demand Educational Resources. Educational brochures, disability and insurance info, recorded conferences and webinars, and more!
- FSR Patient Registry. Improve awareness among doctors and researchers by sharing your experience with sarcoidosis through a 30-minute survey. Your answers to will improve our understanding of sarcoidosis, help researchers design new and improved clinical studies, and help to unlock a cure.
- Find a Clinical Trial: FSR encourages patients to participate in clinical trials, research surveys, and academic studies to help us advance towards a cure.
- Sarcoidosis Diagnosis and Treatment Guidelines. Find the latest guidelines from global sarcoidosis experts and share with your clinicians.
- FSR created a New Patient Roadmap for those newly diagnosed with sarcoidosis. Click here to view and download the flyer.
- Ignore No More: FSR is committed to raising awareness about how sarcoidosis impacts African American women at the highest prevalence and severity. Click here to read our White Paper on Clinical Trials Diversity: Advancing Clinical Trial Equity for Black Patients with Sarcoidosis.
- Walgreens Partnership: Learn about FSR’s Partnership with Walgreens raising awareness for sarcoidosis in April and spring vaccines
Find Support and Assistance
- FSR Global Sarcoidosis Clinic Alliance (FSR-GSCA): Member program consisting of clinics, hospitals, individual providers, patients, and caregivers committed to finding a cure and offering evidence-based, patient-centric care for those living with sarcoidosis.
- FSR Patient Navigator Program: FSR's Patient Navigator Program provides one-on-one support for those newly diagnosed with sarcoidosis, in the diagnosis process, experiencing their first flare, and/or experiencing a new organ manifestation.
- FSR Sarcoidosis Support Group: FSR has launched an online peer-led support group for individuals who have been living with sarcoidosis for more than six months.
- FSR Videos: View webinar and live event recordings on our YouTube channel or on the FSR website in our new Video Library!
- Financial Assistance: On our financial resources page, FSR has pulled together a list of Patient Assistance Programs that provide financial assistance for drugs included on FSR’s SAB-approved list of treatment options for sarcoidosis. Visit the FSR website to view a list of assistance medication programs and access our Prescription Assistance Card.
- Inspire Online Community: FSR is proud to partner with Inspire on the online Stop Sarcoidosis Support Community to provide a much-needed space for those living with sarcoidosis to come together and share experiences. Connect with over 70,000 other sarcoidosis patients and caregivers.
- FSR Sarc Fighter Podcast: FSR sarcoidosis advocate, John Carlin, produces a podcast specifically for individuals whose lives are impacted by sarcoidosis. He discusses the big topics that affect sarcoidosis patients and their loved ones from the basics of the disease, lifestyle changes, treatment options, research progress, and most importantly: the voices of those affected by this disease. Listen here.
Sarcoidosis Awareness Month is sponsored by:
With thanks to our Awareness Month Supporter:
