Tahra Anglade, M.S.

What a gift it was to be immersed and engage with others centering health equity in rare disease. Attending the 2023 Global Genes and Rare Disease Diversity Coalition’s (RDDC) RARE Health Equity Forum was an immersion of engaged and integrated communities sharing their voices, from individuals living with rare diseases, family caregivers, advocates, community partners, and researchers all committed to health equity in rare disease. Given that the theme of this year’s forum focused on “Equity in Action,” the root of presentations and panels was in providing strategic steps toward transformative change in health equity. Conversations were intentional in recognizing the difference between disparities and systemic inequities that promote the social and structural disenfranchisement of rare communities. The following takeaways are the most salient points I have noted from the RARE Health Equity Forum. They may provide complimentary utility for those interested in reinforcing their commitment to taking actionable approaches to support sustainable change in health equity within rare disease communities.

Revamping Rare Disease Research

There are several challenges in the centering of equity in rare disease, including research in rare disease. The Health Equity Forum reinforced the need for transparency in rare disease research, calling for visibility in recruitment and other research processes and maintaining direct and open communication with patients. Additionally, there is a paucity of available research identifying and addressing the current health inequities faced by rare disease communities, including racial and ethnic factors and other social drivers of health such as sexual orientation, gender identity, economic status, and education attainment. It is vitally important to understand how individuals with identities in these groups are impacted by barriers in healthcare access and quality. It is incumbent upon us to enhance rare research in moving health equity forward.

The Role of Historical Trauma in Health Inequity 

Historically marginalized groups have faced unmitigated trauma through reinforced social infrastructure. Long-standing abuse and harm to these communities has had implications for health service and care for generations. The Health Equity Forum highlighted the impact of these systems ingrained in our history on the current status of health justice. Documents such as the Flexner Report advocating for closure or Black medical schools or policies such as American Indian Urban Relocation aiming to displace Indigenous peoples continue to infiltrate structural and systemic domains that ultimately inform health equity at institutional and community levels. 

Healing with Humility

We must learn to lead with humility in our outreach efforts to historically underserved and marginalized rare disease communities. Imparting change, driven by systems of accountability, within organizations seeking partnership with rare disease patient groups, requires a modest approach to engagement with rare communities. Organizational empathy embodies recognizing and supporting the agency of rare disease communities which cultivates level ground to build out authentic, quality partnerships. Trusting and believing in rare communities will support meaningful engagement and help to tailor services and initiatives relevant to addressing rare needs.

Radical change in health equity is possible through radical effort. This work necessitates the support of those with a commitment and passion for health equity. Often there is a glacial pace to the movement of change, seeming minimally incremental. However, with perseverance, it is at the peak of these glaciers that deliberate and sustainable transformation is identified and enacted. It is incumbent upon us to continue to listen with intent, learn with curiosity, and lead with compassion in moving health equity into action. 

Tahra Anglade, M.S.

Researcher, Upequity

Clinical Psychology Doctoral Student, Howard University