NORD is excited to be hosting a series of in-person and virtual community listening sessions exclusively for Latino/a/x people affected by rare diseases in the United States. We invite you to help spread the word about this important opportunity by sharing this programming across your network and encouraging participation amongst Latino/a/x rare disease patients and caregivers.
Since our establishment in 1983 and throughout our existence, NORD has sought to address issues of health equity for the rare disease community. Prior to the passage of the Orphan Drug Act, those living with a rare disease—regardless of race, gender, ethnic background, or financial capacity—had little hope for treatment or therapy in their lifetime. NORD’s rich history in building trust and support within the rare disease community—trust earned through decades of patient-led advocacy—uniquely positions us to lead long-term initiatives to increase inclusion and promote access to rare disease education, timely diagnosis, and appropriate care for people who are part of historically marginalized populations and living with rare diseases.
Through our listening sessions, we aim to gain a better understanding of the experiences of Latino/a/x people in being diagnosed and living with a rare disease. The responses we hear will inform future engagement programming and help us drive solutions to empower Latino/a/x rare community members to achieve their best health and well-being.
The listening sessions are private events; personal information will remain confidential. The sessions are family-friendly for individuals related to registered attendees. We will have warm, delicious food, free NORD swag, and information on community-based resources available to all attendees! Compensation will be provided to participants that attend an in-person session. There are limited spots available for the in-person listening sessions and registration is required to attend.
The in-person listening sessions will be held throughout April and May in the following areas:
- Saturday, April 22, 2023: New York, NY
- Friday, May 5, 2023: Washington, DC
- Sunday, May 7, 2023: Lanham, MD
- Wednesday, May 17, 2023: Houston, TX
We are also offering four virtual listening sessions for the following communities:
- Monday, May 1, 2023: New York, NY (Virtual)
- Monday, May 22, 2023: DC Metro Area (Virtual)
- Thursday, June 1, 2023: National (Virtual) – Latino/a/x patients and caregivers nationwide can join!
- Tuesday, June 13, 2023: Houston, TX (Virtual)
If you have any questions about NORD’s Latino/a/x engagement programming, please reach out to [email protected].