Frank Rivera

Patient Leader

I am a patient advocate as well as a patient for Sarcoidosis. I was diagnosed in 2011, but was misdiagnosed since 2004. I became an advocate when I found out that Sarcoidosis receives the least amount of Government support. I have spoke at 2 Congressional briefings to help raise awareness of the disease . I have been appointed National Sarcoidosis Ambassador. I have also worked with the Rare Disease community to advocate with other org. to raise awareness and also have set up " A Day For Rare Diseases" an event open to the public to raise awareness for all rare diseases on October15,2016. In August 2017 I was diagnosed with Parkinson's. I have been downgraded from chronic to terminally ill

Location

Coram, NY

Nominations

Patient Leader Hero Lifetime Achievement

Frank is a tireless advocate and has been since he started Sarcoidosis of Long Island in 2012. He raises awareness and educates others about rare diseases, health policy, and the serious gaps in mental health services for those with chronic illness through various platforms including TV. He is genuine and a great source of support for all of us.  — Gabrielle

Past Awards Participation

Fifth Annual Health Activist Awards

Nominations

Health Activist Hero

Sixth Annual WEGO Health Awards

Nominations

Patient Leader Hero Best Kept Secret
Frank Rivera

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