Just released: latinos and rare diseases - building equitable access in the rare disease community. Read the report.

Introducing a New Report on Latinos and Rare Diseases

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Throughout 2023, NORD hosted a series of in-person and virtual community listening sessions for Latino rare disease patients, caregivers, and families in order to gain a better understanding of the challenges and barriers they encounter in accessing care, treatment, support services, diagnosis, and information. The ultimate goal of this programming is to improve quality of life for Hispanic and Latino Americans living with rare disease by mitigating barriers to accessing appropriate health care, increasing their confidence in their ability to engage in the health care system, and empowering them to advocate and connect with the rare disease community at large.

NORD has developed a program report that can be utilized as a tool by patient advocacy groups and public health entities seeking to embark on their own Latino engagement programming or improve their current practices. The program report contains detailed information on the community engagement model that guided this programming, and best practices gleaned related to outreach, communication, interpretation, and more. As NORD continues to address issues of health equity for the rare disease community in the United States, we will evaluate the efficacy of this community engagement model in application to other populations that are disproportionately negatively impacted by social determinants of health.

View and download the Latinos and Rare Disease Report in English.

View and download the Latinos and Rare Disease Report in Spanish.

NORD has a designated phone line for our community members that speak Spanish. If you or somebody you know needs assistance in Spanish with navigating their rare disease journey, please call us at (844) 259-7178.

If you are interested in learning more about or participating in NORD’s evolving Latino engagement work as we head into 2024, please email NORD’s Community Engagement Manager, Darby Gavin (dagavin@rarediseases.org). We’d love to hear from you!