Summary
Overview
Work History
Education
Skills
Accomplishments
Websites
References
Timeline
Hi, I’m

Frank Rivera

Coram,NY
Frank Rivera

Summary

A RDLA Advisory Committee Member 2021-October 2023
Patients Rising Senate Member
Autoimmune Association Member
Pharmaceutical advisory member and ambassador, a speaker for the rare
disease community as well as a patient of Sarcoidosis.
Frank is a two time published author of an autobiography called "Walking in Silent Pain" and "I Have Sarcoidosis but it Doesn't Have Me", a book about Strength and Resilience. He fights for those who can't fight for themselves.
Part of a group that had a Medical Journal Paper Published on April 30,2021- Health-Related Quality of Life (HRQoL) in Sarcoidosis: Diagnosis, Management, and Health Outcomes
https://www.mdpi.com/2075-4418/11/6/1089
I have been a local, state, and federal government advocate for Sarcoidosis, an advocate for Diversity, Equity and Inclusion for clinical trials, and has been an advocate for Mental Health for Rare Disease, with an emphasis on Male Mental Health. I decided to speak my truth about Mental Health to let others know it is okay to ask for help, both mentally and physically. I always say you are strong, not weak, if you ask for help. I am just one of 30 million rare disease patients with a story. My goal is to make sure that I get mine and others stories out so they can be heard.

Overview

12
years of professional experience

Work History

Sarcoidosis of Long Island
Cora, NY

President/Startup Founder
04.2012 - Current

Job overview

  • Conducted informative webinars to enhance patient engagement.
  • Led the planning and execution of a powerful Social Justice Webinar in 2020, successfully advocating for social equality and fostering community engagement.
  • Developed and delivered a highly successful mental health webinar in 2020
  • Served as a speaker at two Congressional Briefings in 2015 and 2018, driving Sarcoidosis awareness and securing funding from the United States Federal Government.
  • Established and initiated an Online Sarcoidosis Support Group in November 2019.
  • Patients Rising Patient Advocate Senator
  • Autoimmune Association Volunteer
  • Gave talks at two major World Orphan Drug Conferences, addressing the importance of mental health within this field.
  • Delivered presentations on personal experience with a rare disease to pharmaceutical companies.
  • Part of a group that had a Medical Journal Paper Published on April 30,2021- Health-Related Quality of Life (HRQoL) in Sarcoidosis: Diagnosis, Management, and Health Outcomes https://www.mdpi.com/2075-4418/11/6/1089
  • I have been a local, state, and federal government advocate for Sarcoidosis, an advocate for Diversity, Equity and Inclusion for clinical trials, and has been an advocate for Mental Health for Rare Disease, with an emphasis on Male Mental Health.
  • Illumina Patient Ambassador
  • A former RDLA Patient Advisor Member
  • Represented the organization at community events and public forums to promote its mission.

Stronger Than Sarcoidosis
Coram, NY

President
08.2019 - Present

Job overview

  • Provided emotional support to patients and their families during difficult times.
  • Facilitated communication between providers, patients, and family members.
  • Maintained a thorough knowledge of medical treatments and procedures.
  • Developed educational materials for patient use in understanding their treatment plans.
  • Attended meetings with physicians and other healthcare professionals to discuss cases.
  • Developed and delivered public speaking presentations to large and small audiences.
  • Organized workshops and seminars for patients on a variety of topics.
  • Presented to audiences of over 500 people on topics of government policies, Diversity, Equity and Inclusion of clinical trials and health communities, Mental Health and Chronic illnesses and rare diseases.
  • Conducted research into relevant topics to ensure content was current and accurate.
  • Created PowerPoint slides, handouts, and other materials for use during the presentation.
  • Interacted with attendees before and after each session to answer questions or provide additional information.
  • Drafted press releases, articles, blog posts, and other promotional material related to the conference.
  • Adapted delivery style based on audience size, demographics, interests.
  • Participated in post-event debriefing sessions with colleagues in order to review successes and challenges encountered during the conference.
  • Collaborated closely with other speakers in order to create an integrated program that would maximize value for attendees.
  • Educated families about mental illness and its impact on daily life.
  • Organized outreach activities to raise awareness about available mental health services.
  • Encouraged clients to actively participate in their own recovery process.

Education

Long Island University
Greenvale, NY

Bachelor of Arts from Finance, Business Management
06-1989

Skills

  • Project Management
  • Business Planning
  • Financial Management
  • Product Development
  • Speech Writing
  • Cultural Sensitivity
  • Subject matter expertise
  • Visual Aids Creation
  • Inclusivity promotion
  • Persuasive storytelling
  • Verbal and written communication
  • Proactive Problem Solving
  • Computer savvy
  • Patient Rights
  • Medicaid knowledge
  • Relationship Building
  • Personable nature
  • Healthcare Navigation
  • Phone and Email Etiquette
  • Team Leadership
  • Patient Needs Assessment and Referral
  • Explaining Policy and Procedures
  • Calm and Effective Under Pressure
  • Providing Information and Resources
  • Gathering Information from Patients
  • Resolving Problems

Accomplishments

  • 2015- A commendation from former President Barack Obama for my work in the rare disease community.
  • 2015, 2018- Speaker at Congressional Briefings about Sarcoidosis.
  • 2021- Part of a group that had a Medical Journal Paper Published on April
    30,2021- Health-Related Quality of Life (HRQoL) in Sarcoidosis:
    Diagnosis, Management, and Health Outcomes
    https://www.mdpi.com/2075-4418/11/6/1089
  • 2022- Dorothy Bland Sarcoidosis Award from The Bernie Mac
    Foundation.

References

References available upon request.

Timeline

President

Stronger Than Sarcoidosis
08.2019 - Present

President/Startup Founder

Sarcoidosis of Long Island
04.2012 - Current

Long Island University

Bachelor of Arts from Finance, Business Management

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Frank Rivera