Most Recent Videos
30:42Patient Advocacy Leadership at Its Finest. The Global Liver Institute Rallies Stakeholders to Face Down Liver Disease for Many.
Donna Cryer, JD, is the Founder and CEO of the Global Liver Institute, a patient advocacy group with a substantial reach and impact in the fight against liver disease. She speaks of the broad spectr
25:06The Sickle Cell Disease Association of America Empowers Research and Better Health Care
Beverley Francis-Gibson is the President and Chief Executive Officer of the Sickle Cell Disease Association of America (SCDAA), a 49-year-old organization that advocates for people affected by sickle
24:24Using Data to Bring Change for Minority Health: An Interview with Dr. Gary Puckrein, President & CEO of the National Minority Quality Forum
Dr. Gary Puckrein, President and CEO of the National Minority Quality Forum, a not-for-profit, non-partisan organization dedicated to ensuring that high-risk racial and ethnic populations receive opti
52:45Cell and Gene Therapy Clinical Trials and Patients at a New Frontier in Drug Development
This panel discussion on Cell and Gene Therapy has something for all stakeholders in clinical research. It provides an introduction to and education about clinical trials in this emerging area of dru
32:03N-Lorem Founder Discusses Advancements in Genome Sequencing, Newborn Screening, Regulatory Approaches, and Collaboration with Patients
Stanley Crooke, MD, PhD, talks about his non-profit, which brings the benefits of modern biotechnology to patients with serious, ultra-rare disorders. His pioneering research has led to first-time tr
26:15Increasing Capacity to be More Inclusive and Reduce the Negative Impact on Health of Stigma, Discrimination and Mistrust
Tim Vincent helps organizations increase their capacity to be more inclusive and reduce the negative impact on health of stigma, discrimination, and mistrust. He speaks of his experience training he
27:06Married Couple Face Down Rare Disease Together
Married couple Sarah and Troy Tompkins are a formidable pair when it comes to dealing with her serious rare disease – whether at home, in the hospital, in the public eye, or on Capitol Hill. Sarah’s
35:00Speaking out: Stigma, caregiver stress and serious disease.
Speaking out: Stigma, caregiver stress, and serious disease. Learn about this couple’s harrowing journey, life-saving action, and use of their voices to help others. Daniel Garza and Christian Rami
16:06Mental Health Services for an Underserved LatinX Community
Arturo Carrillo, who has a PhD in social work and is a Licensed Clinical Social Worker, talks about his research into mental health disparities in Chicago’s underserved Latinx neighborhoods, and his
28:04Rare Disease Economic Burden Study and the Impact on Families and Society
Marissa Penrod, a patient advocate Mom, and Annie Kennedy, Chief of Policy and Advocacy for the EveryLife Foundation for Rare Diseases, talk about the recently released Rare Disease Economic Burden St
26:21Sue Peschin, President and CEO of Alliance for Aging Research, speaks about priorities in research, legislation, and awareness to benefit fa
17:54Providing Mental Health Services in Underserved Asian Communities
Melissa Wee, Licensed Clinical Professional Counselor, from the Midwest Asian Health Association, speaks of providing mental health services to underserved Asian immigrant population thanks to a grant
14:23Mental Illness: Patient Advocate Wenora Johnson speaks of her family and coping with mental illness in minority communities.
26:30Diversify Your Clinical Trials Like This! Preparing Communities, Physicians, Families
