1929987 10209427983238157 9198726190408449622 n

Frank Rivera

I advocate for the Sarcoidosis Community for all of those who can't advocate for themselves!


Frank Rivera- Founder/President- Sarcoidosis of Long Island Founder/President- RareNY Frank Rivera founded Sarcoidosis of Long Island in 2012. In 2011 Frank was diagnosed with Sarcoidosis after being misdiagnosed with lung cancer for 7 years prior. Since opening Sarcoidosis of Long Island he has been a local, state and federal advocate for Sarcoidosis. Frank strives to raise awareness for Sarcoidosis nationally, but specifically in the government sector. He has represented the Rare and Sarcoidosis community as a speaker at two Congressional briefings for Sarcoidosis.  Frank is a National Ambassador for Foundation for Sarcoidosis Research. Named RUGD Ambassador for Illumina October 2017 Frank organized RareNY in 2016, to raise awareness for Rare Diseases in the state of New York. He organized “A Day for Rare Diseases” on October 15th, 2016 in Long Island NY, in partnership with Global Genes, to raised awareness for all 7000+ rare diseases. In recognition of Frank’s efforts, Suffolk County and the town of Brookhaven officially declared October 15th “A Day for Rare Diseases”. In 2017 Frank Rivera was named Town of Brookhaven TBRNewsMedia.com "Person of The Year!"

Latest Articles by Frank Rivera

Displaying all 6 stories
  1. What does Terminally Ill Means To Me!

  2. Another Bump in the Road!

  3. Right to Try

  4. Depression and I

  5. Mental Health for a Rare Disease Patient

  6. My Life as a Rare Disease Patient