Wednesday, Apr 15, 2020

COVID-19 Discussion with Patient Advocates

HLTH

In response to the COVID-19 pandemic, our team will be interviewing experts from across the ecosystem to bring the HLTH community timely facts and updates.


Frank Rivera: Patient Advocate- Fight for those who can't fight for themselves! 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.


https://twitter.com/SarcofI


Kristal Kent: Kristal is a Patient Advocate for the Fibromyalgia, Veteran, Chronic Pain and Chronic Illnesses Communities. Utilizing social media, Kristal educates and provides support for her communities. Kristal serves on the Cleveland Clinic Patient Panel and a Board Of Trustee for the Fibromyalgia Care Society Of America.


The Fibromyalgia Pain Chronicles: https://www.facebook.com/FibrolPainChronicles/


Candace Lerman: Candace Lerman, Esq., is an attorney, consultant, and author of the rare disease blog, RareCandace.com. She earned her Juris Doctorate with a concentration in Health Law at the Shepard Broad School of Law at Nova Southeastern University in Fort Lauderdale, Florida and a certificate in Healthcare Compliance from Seton Hall University School of Law. In addition, she holds a Bachelor’s and Master’s degree in International Affairs from Florida State University. A rare disease patient, Candace researched and repurposed a drug to put her blood disorder into remission twice! She works closely with members of Congress on federal healthcare policy, and can often be found on Capitol Hill meeting with staff on various topics involving health policy. Candace serves on the board of Our Odyssey, an organization dedicated to fostering support and community among young adults living with rare and chronic conditions.


https://twitter.com/RareCandace


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