Frank Rivera- Strength, Resiliency and Purpose: A Patient's Perspective

Frank Rivera, is the Founder of Stronger Than Sarcoidosis and Sarcoidosis of Long Island. He is also a patient living with Sarcoidosis, a rare disease. Frank's story is one of determination, resiliency and a true desire to be of service to others. In this episode he shares the importance of mindset in dealing with chronic conditions and the hurdles patients experience when finding trials. Frank relays the heartbreaking feelings of rejection patients feel when not qualifying. He vulnerably shares about the emotional toll of a rare disease and challenges that occur when one's identity is taken away, and the importance of reinventing one's self and finding purpose. Frank tells the patient's perspective using clinicaltrials.gov and the need for trials to be listed in "patient-speak." Sites, such as Power, are making strides in relaying information about trials in a manner that is easy for patients to search and understand. Patients want to be involved in trials from beginning to end, not just recruitment. When the number of trials listed on clinicaltrials.gov dropped from 226 to 70, Frank phoned pharmaceutical companies to inquire what happened. After learning the reason was lack of enrollment, Frank's natural inquisitiveness and solution-oriented mindset led him to look to partner with other rare disease organizations and optimize successful strategies. In this episode, Frank outlines the characteristics of a fantastic care team and the steps he took to partner with government advocates. Grab a notepad, you'll want to take notes, and prepare to be inspired. To find out more about Frank Rivera and his organizations, check out: Sarcoidosis of Long Island: https://www.sarcoidosisofli.org/ IG: StrongerThanSarcoidosis https://www.instagram.com/strongerthansarcoidosis/ LinkedIn: https://www.linkedin.com/in/sarcoidosisofli/ Also mentioned in this episode: Power https://www.withpower.com/