Hi all! Hope you all like my posts. I am writing to help others, but mostly to help myself cope with my Rare Diseases.
Founder/President- Sarcoidosis of Long Island
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 to raise awareness for Sarcoidosis in the government sector. He has also spoke at two Congressional briefings for Sarcoidosis.
Frank is a National Ambassador for Foundation for Sarcoidosis Research, Global Genes Alliance Member, EveryLife Foundation Working Group Member and Long Island Liaison for Nord.
Frank organized RareNY in 2016, to raise awareness for Rare Diseases in New York. He organized “A Day for Rare Diseases” in October 2016 in New York with Global Genes. The event raised awareness for all 7000+ rare diseases to the public.
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