This February 13, 2025, PQA Quality Forum Webinar, focused on addressing inequities in care and improving quality in rare disease.
The burden of rare disease is enormous, and the barriers to high-quality care are even greater for underrepresented patients and their caregivers.
Jocelyn Cooper, Program Manager for the Rare Disease Diversity Coalition (RDDC) at the Black Women’s Health Imperative (BWHI), shared findings from a groundbreaking national survey that reveals critical insights into the challenges of accessing necessary health care by marginalized communities such as minority ethnic groups, rural populations, LGBTQ+ communities, and low-income Americans, to name a few. The survey, “Inequities in the Rare Disease Community: The Voices of Diverse Patients and Caregivers,” was conducted jointly by RDDC and the National Organization for Rare Disorders.
Richard Schmitz, Chief Engagement Officer at PQA, opened the forum with an overview of the recently released report from PQA Convenes: Quality Medication Use in Rare Disease. This November 2024 event featured nearly two dozen individuals with lived experience and professional expertise, who shared insights on what constitutes quality in rare disease medication use and how to improve it.
PQA Education Director Tammy Malm hosted the forum and moderate an audience question-and-answer session at the end of the webinar.