Insights

More Than Good Intentions: Diversity, Equity & Inclusion Requires a Program-Level, Strategic Framework

Sponsors understand the importance of diversity, equity and inclusion (DE&I) efforts and have begun to implement them in their trials, but diversity in clinical trials has yet to be achieved. To address this gap between aspiration and execution, sponsors–as well as sites and CROs– must recognize that DE&I is not merely another project. Neither is […]

Patient 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 spectrum of stakeholders and topics that are the focus of the Global Liver Institute. These topic include policy reform, equity, clinical […]

The 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 cell conditions. She tells of facilitating discussions between people living with sickle cell disease and pharmaceutical companies to plan clinical trials that are more likely to enroll […]

Using 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 optimal health care. His organization assembles and presents data essential to policy makers as they work to plan a more equitable distribution of health care and the benefits of […]

Cell 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 drug development. Moderator Steve Smith is a patient advocate whose son and granddaughter have been diagnosed with unrelated rare disorders. He explains how genetic […]

N-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 treatments for patients that at one time had no hope. Dr. Crooke founded the non-profit N-Lorem organization to transform the landscape for rare disease clinical research and […]

Increasing 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 health care providers to use cultural humility and other culturally competent communication strategies when interacting with HIV and COVID patients, members of the LGBTQ+ communities, ethnic […]

Married 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 Ehlers-Danlos Syndrome is front and center in their lives each day and night, but the Tompkins adapt and press […]

Speaking 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 Ramirez faced their diagnosis of HPV and anal cancer head-on, and stood up to discrimination and stigma, to bring about a better outcome.

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