Foundation for Sarcoidosis Research

Foundation for Sarcoidosis Research Since 2000, FSR has fostered over $9 million in sarcoidosis-specific research efforts and has worked diligently to provide resources to thousands.
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The Foundation for Sarcoidosis Research is the nation’s leading nonprofit organization dedicated to finding a cure for this disease and to improving care for sarcoidosis patients. Since 2000, FSR has fostered over $5 million in sarcoidosis-specific research efforts and has worked diligently to provide resources to thousands.

On Tuesday, May 19th FSR was proud to participate in the annual Coalition of Skin Diseases (CSD) Hill Day in Washington,...
06/01/2026

On Tuesday, May 19th FSR was proud to participate in the annual Coalition of Skin Diseases (CSD) Hill Day in Washington, DC, bringing together patient advocates from across the country to raise awareness and advocate for policies that support patients living with chronic diseases.

This year’s event brought together 75 patient advocates representing 25 organizations and 26 states, resulting in an impressive 104 meetings with congressional offices. FSR was represented by FSR-Global Sarcoidosis Clinic Alliance Community Group Leaders and Advocates, Marsha H. and Fawn W., Fawn’s husband Nick, and FSR’s Director of Global Patient Programs, Kate Anastasia. Together, they shared personal stories and highlighted the urgent need for continued research, improved access to care, and greater awareness of sarcoidosis.

We are grateful to everyone who participated and to CSD for coordinating this important event. 💜

As we reflect on the successes of Sarcoidosis Awareness Month, we are grateful for every patient, caregiver, and advocat...
05/29/2026

As we reflect on the successes of Sarcoidosis Awareness Month, we are grateful for every patient, caregiver, and advocate who engaged with the FSR-SARC Patient Registry. Your participation is helping drive research forward, strengthen understanding, and build a better future for this community. The impact doesn’t end here – stay connected, stay involved, and keep making your voice count.

Momentum is continuing to build for sarcoidosis research. FSR has partnered with ATS to support the professional develop...
05/27/2026

Momentum is continuing to build for sarcoidosis research. FSR has partnered with ATS to support the professional development of early-career investigators in sarcoidosis through the 2025 ATS/FSR Partner Grant – a $50,000 award over a one-year period starting in January 2027. This funding has helped many fellows and postdocs transition from trainee to independent investigator, and a recognized expert in their field.

Full proposals are due by July 1, 2026, and funding begins January 2027.

If you or a colleague may be eligible, please visit the ATS website to learn more and apply: https://loom.ly/-pQX_Ww

Today, we honor and remember the brave service members who made the ultimate sacrifice. Memorial Day is a time to reflec...
05/25/2026

Today, we honor and remember the brave service members who made the ultimate sacrifice. Memorial Day is a time to reflect on the courage, dedication, and selflessness of those who gave their lives in service to others. We remember their sacrifice, honor their legacy, and hold their loved ones in our hearts.

At FSR, we are also committed to supporting veterans and first responders impacted by service-related health challenges, including sarcoidosis and environmental exposures.

This Memorial Day, we pause in gratitude for those who served and sacrificed for our freedom.

While answering questions about your sarcoidosis experience is crucial to furthering sarcoidosis research, the FSR Patie...
05/22/2026

While answering questions about your sarcoidosis experience is crucial to furthering sarcoidosis research, the FSR Patient Registry has more to offer than surveys.

With the Symptom and Activities Tracker, you can log how you’re feeling each day and rate the severity of what you’re experiencing.

You also have access to the journaling function, which gives you the space in the platform to write out any thoughts you are having relating to your journey whether it be more about how you’re feeling that day or questions you want to bring to your next appointment with your physician. You even have the option to separate the journal entries into different categories so you can easily refer to them when needed!

Another new feature of the FSR Patient Registry is the option to securely and easily link your electronic health records. Each connected record adds more complete, high-quality data that can accelerate discoveries and support better diagnosis, care, and treatment options for the sarcoidosis community.

To learn more and watch the new FSR Patient Registry video, visit www.stopsarcoidosis.org/patient-registry

Calling all clinician scientists! 🔬Do you have an innovative sarcoidosis pilot study? FSR is accepting Letter of Intent ...
05/21/2026

Calling all clinician scientists! 🔬

Do you have an innovative sarcoidosis pilot study? FSR is accepting Letter of Intent applications for its 2026 Pilot and Cardiac Sarcoidosis Grants! These grant mechanisms include up to $100,000 for novel and impactful research studies for the field of sarcoidosis.

The Pilot Grant is open to any specialty and organ manifestation, and the Cardiac Grant is open to any related specialty for cardiac sarcoidosis focused projects.

Visit the Pilot webpage: https://www.stopsarcoidosis.org/pilot-grants/ and Cardiac webpage: https://www.stopsarcoidosis.org/cardiac-sarcoidosis-grant/ to submit your Letter of Intent before the deadline Thursday, June 4 at 11:59pm EST!

Clinical trials save lives. They are how we find better treatments and, one day, a cure — and every participant brings u...
05/20/2026

Clinical trials save lives. They are how we find better treatments and, one day, a cure — and every participant brings us closer. Yet, barriers like job security and financial uncertainty keep too many patients, particularly those from underrepresented communities, from taking part.

You should never have to choose between your job and your health. Support is available.

This , FSR is making sure every sarcoidosis patient knows about an important 2024 milestone that can support participation: FMLA job-protected leave now covers eligible patients participating in clinical trials and the family caregivers supporting them. This means eligible patients can participate without risking their job, their health insurance, or their career advancement.

Learn about your options and consider joining a trial. Ask your doctor if a clinical trial is right for you. View the FMLA factsheet and learn more at www.stopsarcoidosis.org/fmla.

May 20th is National Clinical Trials Day, commemorating the first randomized clinical trial in 1747. This milestone in m...
05/20/2026

May 20th is National Clinical Trials Day, commemorating the first randomized clinical trial in 1747. This milestone in medical history has evolved into a vital part of modern medicine, driving advancements and finding cures for diseases like sarcoidosis.

Clinical trials test new treatments and diagnostics, with patient participation being crucial. For rare diseases like sarcoidosis, finding eligible participants is challenging due to strict criteria and a small patient population. The Foundation for Sarcoidosis Research works to inform patients about trial opportunities through our website, social media, Patient Registry, and Clinical Trial Interest Indicator.

Interested in joining a clinical trial? Talk to your sarcoidosis specialist or contact FSR for more information. Together, we can advance research and find better treatments for sarcoidosis.

Learn more about current recruiting trials here: https://loom.ly/rzqlBcU

05/18/2026

In 2025, only 19% of participants in the FSR Patient Registry identified as Black or African American, highlighting a critical gap that must be addressed to advance research, improve care, and drive better outcomes for everyone living with sarcoidosis. By joining the FSR Patient Registry, you can help build more complete data, strengthen research, and move toward a more equitable future.

The FSR Patient Registry surveys include questions about demographics, quality of life, pain, fatigue, employment, medications, medical care, and more, including a new survey for Military Veterans — helping create a fuller picture of what it means to live with sarcoidosis.

This video features voices from the Coalition to Transform Clinical Trial Engagement, alongside the dedicated Women of Color Patient Advisory Committee behind FSR's Ignore No More Initiative, whose leadership and advocacy are helping expand access to clinical research and ensure trials better reflect the communities they are meant to serve.

Watch the video: https://youtube.com/shorts/w26kSdTA5NY

Learn more here: https://www.ignorenomore.org/

Last chance to catch today's free virtual patient and family education event hosted by the American Thoracic Society’s P...
05/16/2026

Last chance to catch today's free virtual patient and family education event hosted by the American Thoracic Society’s Public Advisory Roundtable (PAR):

Patients & Experts Forum Drug Repurposing and Complementary Therapies for Lung Health

Date: Saturday, May 16, 2026
Time: 10:00 a.m. – 2:00 p.m.

This annual event brings together leading experts and patient voices to share the latest insights on lung health, emerging therapies, and supportive care approaches.

Breakout topics include:
Cystic Fibrosis, Tuberous Sclerosis Complex, Pulmonary Alveolar Proteinosis (PAP), Hermansky-Pudlak Syndrome, Alveolar Capillary Dysplasia, Lung Transplant, Allergy and Asthma, Pulmonary Fibrosis, and more.

To attend virtually, please email Nusrat Aparna at [email protected].

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