Erkin Ozel

I had the chance to attend this event through the generous support of the RDDC Rare Disease Health
Equity Scholarship. As a physician-scientist in training, I previously attended clinical and scientific
conferences that aimed to disseminate the current best practices and most recent literature. This was
my first time attending a health equity-focused conference. The conference provided a unique
opportunity for all stakeholders in the rare disease space to come together and learn from each other.
The panel format allowed different viewpoints and diverse identities to be represented and helped
attendees from different backgrounds to relate to their personal experiences.

My early research experience in inherited metabolic disorders in medical school shaped my clinical
interest in medical genetics and rare diseases. In the last few years, there has been significant
progress in research and treatments in this field however, advocacy and equity work are essential to
complement this progress to ensure everyone can access these advances. The “Equity in Action”
theme was well-directed to demonstrate how these efforts look like in real life.

The sessions that focused on racism, and the specific experiences of Native and Hispanic populations
highlighted the longstanding systemic injustices and set the framework for rightful equity action. As
one speaker pointed out equity is about transfer of power and resources, therefore, it is a key first
step for everyone in positions of power to recognize their privilege and be comfortable with being
uncomfortable. Learning about many organizations active in rare disease space will help me provide
resources for my patients and form partnerships to direct my advocacy efforts. One key message
stood out for me on community work: “If the community you work with does not have the power to
change the work you are doing, you are not doing effective community work.”

RAREly told stories viewing showed how powerful people’s contributions of their personal
experiences via storytelling can be effective media for learning and as patient resources.This inspired me to use narrative medicine to highlight patients’ experiences as I care for more families. I also set a personal goal for myself to write a children’s book or use social media as a tool to reach out to a greater community. Meeting people passionate about rare diseases and networking with leaders in the field will set me up on the right path to make the greatest impact.

Table talks was a great opportunity to discuss the current important topics in rare disease. I had a
very interesting question: “what can the United States learn from developing countries?” and had the
chance to discuss this with attendees representing patients from Brazil and Indian Americans.
Growing up and studying medical school in Turkiye, I was also able to provide a unique perspective on
this topic and we all learned from each other and developed our ideas in a globally relevant context.

Overall, Rare Health Equity Forum affirmed my belief that the steps needed to improve the lives of
people with rare diseases will benefit all of society and reform the way we practice medicine. I believe
the biggest strength of the Global Genes organization and the Rare Health Equity Forum is its
expanding inclusivity and representation of all communities, identities, and nations and together we
can do this.

Erkin Ozel