The 2nd RARE Health Equity Summit in Atlanta presented by Rare Disease Diversity Coalition (RDDC) and Global Genes brought together various stakeholders in the rare disease community to identify the challenges that disproportionately affect underrepresented populations and define collaborative efforts to address those inequities. The diversity of speakers ranged from government officials to professors to medical practitioners to patients and patient advocates. The array of topics over 2 days included lived experiences from patients to caretakers, who are impacted, to scientific-based facts and resources, providing information for the various attendees. Hundreds of attendees, both virtually and in-person, were actively present in their interest to ameliorate rare diseases for minority populations.
The Summit highlighted some areas of progress and other areas of needs. For example, the rare disease scleroderma has a shorter symptom to diagnosis rate and the Food and Drug Administration shared some facts on how they have helped with this process. There is a continual need for communities and partners to come together and build upon the feelings of trust. Many of the sessions incorporated cultural humility and tips to exhibit more inclusive behaviors within our healthcare ecosystem. The Summit generated new ideas and potential partnerships. Conversations overheard included sharing future Summits with more medical practitioners besides doctors, to encourage friends and patient advocates to attend, as well as to help promote the Summit within the communities that the attendees identify with. The Summit is an important component to the rare disease network and is one of the approaches that we are taking to make a difference.
Please see a few captured moments from the Summit below and view the entire gallery here.