Just wanted to let you all know I actually got a story that was amazingly written by Nate Davis and was published by a website called Thrive Global, who is none other run by Arianna Huffington!! If you don’t know who she is check out The Huffington Post!!
You don’t know what this means to get my story out there for all of the rare disease community! I am beyond happy!
I have been through so many rough times in the past 6-8 months that I really want to make sure we get our story told and raise awareness for the whole rare disease community and especially for the Adult Rare Disease Community! We need our stories to be heard too!!
Here is the link to the story:
https://www.thriveglobal.com/stories/25259-my-life-as-a-rare-disease-patient
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Author: fjr311
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 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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