Sarcoidosis
of

 Long Island

ABOUT

Sarcoidosis of Long Island has grown into an advocating organization to fight for the rights of people who have this rare disease called Sarcoidosis. We fight for those who can't fight for themselves. We work with local, county, state and national government officials to gain recognition and raise awareness for this rare terrible disease

Frank Rivera- President-
Founder/President- Sarcoidosis of Long Island
Founder/President- RareNY
Founder/President- RareisnotRare- MentallyARare project


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”. 
 
PLEASE CHECK OUT MY BLOG TO LEARN MORE ABOUT ME:

http://lifeasararepatient.blog


ALSO WANT TO LET YOU KNOW THAT SINCE DUE TO MY HEALTH TAKING A TURN FOR THE WORSE, I HAVE BEEN DOWNGRATED FROM CHRONIC TO TERMINALLY ILL. I HAVEN'T BEEN ABLE TO GO OUT AND DO TOO MUCH FROM A PHYSICAL STANDPOINT OR A TOO STRESSFUL MENTAL ASPECT AS WELL. SO INSTEAD I HAVE BEEN ABLE TO HAVE GREAT HELP FROM PEOPLE LIKE NBC NIGHTLY NEWS COME TO MY HOUSE AND SPEND QUALITY TIME WITH ME AND INTERVIEW ME ABOUT "RIGHT TO TRY" LEGISLATION. THEY DID NOT MAKE ME SAY ANYTING I DIDN'T WANT TO AT ALL!
GEOFF BENNETT AND CREW WERE ABSOLUTELY AMAZING! 

I ALSO HAVE RECEIVED 3 BLOGS OF MINE PUBLISHED BY THRIVE GLOBAL WEBSITE:





HERE IS THE INTERVIEW: