Newly Diagnosed FAQs

If you are looking for information on possible treatment options, you may find information here: Treatment Options. You may also find publications about treatment protocols here: Treatment Protocol and Guidelines. Only you and your physician can make the decision on what treatment option is best for you.  

FSR has created several different resources to help you navigate your sarcoidosis journey: 

FSR’s Patient Navigators provide one- on- one support for those just beginning their sarcoidosis journey, or experiencing a new manifestation. These specially- trained peers provide patients with an opportunity to speak to someone who understands what it’s like to have sarcoidosis, while providing support and guidance to those struggling with this disease. 

FSR’s virtual Patient Support Groups meet twice a month and are facilitated by patients with backgrounds in clinical mental health. These meetings provide patients opportunities to come together and gain support and form community where they can share experiences and resources. 

FSR also holds virtual events and webinars throughout the year, which will be posted on our website as they become available for registration: events page. 

You are encouraged to watch our previously recorded webinars in our video library. FSR makes it a priority to record and share these videos to ensure all those in our sarcoidosis community can access the invaluable information shared by our expert presenters. 

If you are looking to join a clinical trial, please fill out the form on our Clinical Trials Page to be considered. You may also join our patient registry to help assist in accelerating research and share your story with us. 

FSR has three different resources available to sarcoidosis patients looking for support and to connect with other patients.  

FSR’s Patient Navigators provide one on one support for those just beginning their sarcoidosis journey or experiencing a new manifestation. These specially- trained peers provide patients with an opportunity to speak to someone who understands what it’s like to have sarcoidosis, while providing support and guidance to those struggling with this disease. 

FSR’s virtual Patient Support Groups meet twice a month and are facilitated by patients with backgrounds in clinical mental health. These meetings provide patients opportunities to come together and gain support and form community where they can share experiences and resources. 

FSR’s Inspire Community connects patients, families, friends and caregivers for support and inspiration. This community is sponsored by the Foundation for Sarcoidosis Research, an Inspire trusted partner. 

You may read our page about corticosteroids for more information. You may find more information as well in both our Town Hall: Steroids and Sarcoidosis session and our FDA listening session.  

There is information on emotional and mental health in our wellness video library. 

FSR believes that collaboration is the key to accelerating sarcoidosis research initiatives and work towards better treatments and a cure for sarcoidosis. Our pharmaceutical partnerships help to provide the financial support for FSR to provide the responsive and critical disease educational information and patient support programing our community needs to help them manage living with sarcoidosis. Our pharmaceutical partners have been committed to addressing the challenges experienced by those in our community and ensuring the patient voice remains central to this work. We will continue to build and grow relationships with these strong partners, all who are passionate about making progress towards our mission and improving the lives of those living with sarcoidosis. 

On April 21, 2022, The Foundation for Sarcoidosis Research (FSR) hosted a virtual Patient Listening Session on Pulmonary Sarcoidosis with the US Food and Drug Administration (FDA).  Six patients and one caregiver impacted by sarcoidosis shared their stories to highlight the challenges of misdiagnosis and of long diagnosis journeys. They recounted their daily struggles associated with living with sarcoidosis. They strongly urged the FDA to consider the critical need for drug development, and the necessity for more flexible clinical trials and approval pathways. Learn more about FSR’s FDA Patient Listening Session on Pulmonary Sarcoidosis by reading our summary white paper here. 

We do not currently have a program available for financial assistance, however FSR provides a number of financial assistance resources on our financial assistance page.  

Black and African Americans are 2.5 times more likely to have sarcoidosis than White Americans. They experience more severe and chronic forms of sarcoidosis, worse health outcomes, and a higher hospitalization and mortality rate than other groups. Pursuing health equity means eliminating health disparities and striving for the highest possible standard of health for all people. Click on the link to learn more about our ACTe Now campaign. If we learn more about those who are most impacted, then we will be able to get that much closer to finding a cure.  

We are in the process of building our robust physician directory. In the meantime, you may check out WASOG’s listing of sarcoidosis clinics or email info@stopsarcoidosis.org with your name, area you live in, and what kind of sarcoidosis physician you are looking for to learn more information.  

FSR follows CDC guidance on in-person events. You may check our events page for the latest information.  

You may visit our organs involved page to find out more information about specific manifestations.   

FSR staff are unable to provide medical advice. For medical advice, you should work with your physician. We do have information in our video library that covers a wide range of topics from experts around the world.  

There are many ways you can get involved with FSR! We have opportunities to become an FSR Global Sarcoidosis Clinic Alliance volunteer with applications open until February 3rd, 2023. We also have a variety of resources available to help you raise awareness on our Sarcoidosis Awareness All Year Long page.  

We have a number of clinician-specific programs. Please encourage your clinician and physician to join our clinician-specific email list to keep up on the latest research and clinical best practices. You may also have your physician contact us at info@stopsarcoidosis.org or call us 312-341-0500 and we will be happy to share more information about sarcoidosis.  

You may have a lot of questions about sarcoidosis, especially if you are newly diagnosed. And other times, you may not know what to ask your sarcoidosis specialist, especially in the moment. We recommend jotting down a few notes ahead of time to bring with you to your next appointment so you can stay focused on your most important inquiries. Click here to read recommended questions to ask your provider.