Archived Events
2023 RARE Health Equity Forum
The RARE Health Equity Forum convenes stakeholders in the rare disease space to identify ways to better serve marginalized populations within the rare disease community. In its third year, the event focused on the theme of “Equity In Action”.
View AgendaEquity in Action
Over the past two years we have worked as a community to learn about, and discuss the biases, barriers and challenges that marginalized communities face within rare disease. We have recognized the need to work together to bring forward more meaningful approaches to tackling these challenges. In 2023, sessions provided attendees with actionable tools and strategic insights to support underserved and/or underrepresented patients within their community.
Through interactive plenary sessions and networking, this event empowers attendees to advocate for more inclusion in the rare disease community and provides them with strategic insights and tools to support underserved and/or underrepresented patients.
Watch Sessions from the 2023 RARE Health Equity Forum
Welcome Remarks from Charlene Son Rigby and Jenifer Waldrop
Charlene Son Rigby, Global Genes CEO, and Jenifer Waldrop, Executive Director of the RDDC (Rare Disease Diversity Coalition) welcome attendees. The RARE Health Equity Forum convenes stakeholders in the rare disease space to identify ways in which we can better serve marginalized populations within the rare disease community.
Watch Welcome RemarksRacism – A Historical Foundation for Systemic Disparities
Racial inequities persist in all of our systems and institutions, including the healthcare system. Mario Estevez,
Organizer & Trainer for the Racial Equity Institute, discusses the historic roots of those inequities, and the role the scientific community played in cementing those disparities.
How to Ensure Diverse Patient Participation in Clinical Trials and Research
Improving equity in clinical trials and research requires considering barriers to patient participation at multiple levels and identifying strategies to address specific issues at each level. This session covers how patients can and should be on the front lines in their community, and what the relationship should look like between community leaders and researchers.
Watch SessionThe Intersectionality of Identity, Culture & the Rare Disease Experience
In order to build cultures of equity through community engagement, we first need to understand the root of each culture and ways in which a person’s lived experience, beliefs and cultural values impact their interaction with the healthcare system. In this session, panelists discuss their different lived experiences and cultural backgrounds, how their rare journey is unique and what health equity means to them.
Watch SessionEngagement Strategies: How to Find and Leverage Partnerships with Community Leaders
Building relationships with local stakeholders to co-create community informed and centered solutions is essential to addressing health disparities. This session features speakers from organizations that have successfully established relationships in underserved and under-resourced communities.
Watch SessionHealth Equity in Action: Health Equity Grant Recipients and RDDC Fellows
Recipients of the Health Equity Grant and the RARE Disease Diversity Coalition (RDDC) Fellowship shared insights into how the funds they received will help to close the gap in health inequities.
Watch SessionBringing Health Equity & Positive Health Outcomes to Rural & Underserved Populations
Promoting health equity requires collaboration among key stakeholders in health and social systems, developing strategic partnerships, and engaging across institutional boundaries to identify local needs. Panelists will also discuss what the medical care system is doing to support underserved communities in unique ways.
Watch SessionLeveraging Underutilized Health Services to Support Underserved Populations
Our communities of most need are often those who are intentionally excluded and economically neglected. Presenters will dive into how health professionals can utilize existing place-based whole person care providers to address patients’ unique health needs while supporting social needs and risk factors, providing health education, and building client and community capacity.
Watch SessionDisease, Distrust, Disparities and Direction: American Indian and Alaska Native Socio-political Histories, Historical Trauma, and a Pathway to Wellness
American Indian and Alaska Native (AI/AN) peoples have been targets of genocide since early European arrival, including using disease as biological warfare. Esther Lucero, MPP, CEO of
Seattle Indian Health Board, outlines this history and the continued effects of historical trauma to implement true systems of equity.
Actionable Steps to Improve Diverse Engagement in Clinical Trials
Women of Color have the highest prevalence and worse outcomes for sarcoidosis. To address this, Foundation for Sarcoidosis Research launched an awareness campaign which drew over half a million media impressions in just 5 months. This case study will share how to create effective health equity national campaigns from concept to actionable recommendations.
Watch SessionClosing Remarks: Charlene Son Rigby and Jenifer Waldrop
Charlene Son Rigby, Global Genes CEO, and Jenifer Waldrop, Executive Director of the RDDC (Rare Disease Diversity Coalition) close out the 2023 RARE Health Equity Forum, and share insights learned, and what to expect over the next year in the health equity and rare disease space.
Watch Closing Remarks