Frank Rivera | President
Stronger Than Sarcoidosis

Frank Rivera, a rare disease patient advocate, an Illumina Ambassador, A RDLA Patient
Advisory Council Member, Patients Rising Senate Member, a pharmaceutical advisory member and
ambassador, a speaker for the rare disease community as well as a patient of Sarcoidosis. I also have
Sjogren's Syndrome, IBS, MS, and Parkinson's. 
Frank is a two time published author of an autobiography called "Walking in Silent Pain" and "I Have Sarcoidosis but it Doesn't Have Me", a book about Strength and Resilience. He fights for those who can't fight for themselves. 
In 2019, Frank started the National Sarcoidosis Online Support Group for all Sarcoidosis Patients and Caregivers. Frank Rivera- President- Stronger Than Sarcoidosis Founder/President- Sarcoidosis of Long Island Thrive Global- Author and Blogger Ambassador- Illumina  
A RDLA Advisory Committee Member 2021-October 2023
Patients Rising Senate Member 
Part of a group that had a Medical Journal Paper Published on April 30,2021- Health-Related Quality of Life (HRQoL) in Sarcoidosis: Diagnosis, Management, and Health Outcomes https://www.mdpi.com/2075-4418/11/6/1089
In 2011, I was diagnosed with Sarcoidosis after being
misdiagnosed with lung cancer in 2004 and being treated with four years of chemotherapy and
radiation for a disease I never had.
Due to that, I started a nonprofit organization called Sarcoidosis of Long Island in 2012. I didn't want
anyone to have to go through what I did to get diagnosed, and also to make sure Sarcoidosis patients
know YOU ARE NOT ALONE! Unfortunately due to my diseases, I have been through 9 surgeries, I have been a local, state, and federal government advocate for Sarcoidosis, an advocate for Diversity, Equity and Inclusion for clinical trials, and has been an advocate for Mental Health for Rare Disease, with an emphasis on Male Mental Health. Mental Health has been a focus of mine because in 2015, I was told there wasn't any other medication for me. I was in pain, with no sign of a cause or a cure for Sarcoidosis. With that being my options I started to think of my options and didn't see much at the time. I put myself in a 72 hour watch, also known as a suicide watch. Knowing how strong I am, it made me worry about others in the rare disease community and their Mental Health. I decided to speak my truth about Mental Health to let others know it is okay to ask for help, both mentally and physically. I always say you are strong, not weak, if you ask for help. I am just one of 30 million rare disease patients with a story. My goal is to make sure that I get mine and others stories out so they can be heard and so they know They Are Not Alone.