Oct 31, 2024
On October 28, 2024, the Foundation for Sarcoidosis Research (FSR) hosted a groundbreaking Externally Led Patient-Focused Drug Development (EL-PFDD) meeting on sarcoidosis with the U.S. Food and Drug Administration (FDA). This virtual event attracted nearly 350...Topics: Advocacy/ Awareness/ Patient Voices/ Take Action
Oct 25, 2024
“I was diagnosed with Cutaneous Sarcoidosis in July of 2011. When I was diagnosed, I was alone and didn’t know what this disease was much less how to pronounce it correctly, which I’m still working on. Ha. After Googling Sarcoidosis, I was a tad bit scared; I...Topics: Living with Sarcoidosis/ Patient Voices
Sep 17, 2024
These last few weeks have been very rough on me. I feel as if I have been going through both a spiritual and existential crisis. Sarcoidosis has completely shifted and changed my life and how I view and live in this world. The word “silence” has been both...Topics: Living with Sarcoidosis/ Patient Voices
Jul 23, 2024
Before my heart disease journey began in Spring 2019, I was a passionate and dedicated educator and led a dynamic and fulfilling life. I was very active and busy with work, church, and my beloved Sorority of Delta Sigma Sorority, Inc. I never had any health issues. I...Topics: Awareness/ Living with Sarcoidosis/ Patient Voices
Jul 9, 2024
My journey with neurosarcoidosis began on May 5, 2013, when I woke up in the morning with the worst headache of my life, light sensitivity, and double vision. After an evaluation by a neuro-ophthalmologist, a negative MRI, a Lumbar Puncture (which relieved my...Topics: Awareness/ Living with Sarcoidosis/ Patient Voices
Mar 27, 2024
26 Patient Volunteer Leaders representing 16 states and 17 hospitals joined the Foundation for Sarcoidosis Research (FSR) at the inaugural FSR Global Sarcoidosis Clinic Alliance (FSR-GSCA) Volunteer Patient Leadership Advanced Training Conference held at Cleveland...Topics: Community Partners/ FSR Events/ News/ Patient Voices
Feb 13, 2024
The Foundation for Sarcoidosis Research is part of a 27-member coalition dedicated to improving access to supplemental oxygen for all in need. Chasta Posey, FSR Patient Advocate, Patient Navigator, Member of the FSR Women of Color Advisory Committee, and FSR Global...Topics: Advocacy/ Awareness/ Living with Sarcoidosis/ News/ Patient Voices/ Take Action
Oct 19, 2023
Why is finding your community important? After a diagnosis that changes your life, you need people who understand the journey you are about to embark on and find strength and support from others. After getting my sarcoidosis diagnosis I felt alone, I have family,...Topics: FSR Events/ Patient Voices
Sep 14, 2023
Foundation for Sarcoidosis Research (FSR), the leading international nonprofit organization dedicated to finding a cure and improving care for sarcoidosis patients, conducted a two-day training of patient Volunteer Leaders to collaborate with and support the FSR...Topics: Advocacy/ News/ Patient Voices
Sep 13, 2023
My journey with Interstitial Lung Disease (ILD) started about 15 years ago, although I did not know it at the time, nor did the physicians who were then treating me. At an annual physical, at the age of 46, I mentioned that my knees were a bit sore after physical...Topics: Awareness/ Living with Sarcoidosis/ News/ Patient Voices
