NORD to host ‘Latino/a/x Listening Sessions’ for rare disease community

New forums for AADC, other disorders will look at health disparities in US

Margarida Maia, PhD avatar

by Margarida Maia, PhD |

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The National Organization for Rare Disorders (NORD) is seeking to address health disparities in the rare disease community in the U.S. with the launch of new “Latino/a/x & Hispanohablantes Community Listening Sessions” — events for patients and caregivers who are, as the name says, Latino and Spanish-speaking individuals.

Listening sessions are one of many initiatives that patients and caregivers can use to share their experiences and perspectives on rare diseases such as aromatic L-amino acid decarboxylase (AADC) deficiency.

In-person listening sessions will be held throughout April and May in New York City, Washington, D.C., Lanham, Maryland, and Houston. There also will be four virtual listening sessions — three held regionally, in New York, the D.C. metro area, and Houston, and the fourth a national session open to Latino patients and caregivers across the country.

The sessions, hosted by NORD, are closed and personal information will be kept confidential. These events are family friendly, and there will be “warm, delicious food, free NORD swag, and information on community-based resources,” according to the organization’s website, which has pages in English and Spanish.

Anyone interested in attending the sessions in person will get paid for their time. However, there are only a limited number of spots available, and signing up beforehand is required to attend.

Through the listening sessions, NORD hopes to find solutions to empower Latino patients to achieve their best health and well-being.

“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,” the website states.

Anyone with questions about NORD’s Latino engagement program can reach out to the organization at [email protected] or via WhatsApp at 617-872-0854.

Through its new initiative, NORD is seeking to gain a better understanding of the unique experiences this patient population faces in being diagnosed and living with a rare disease. The listening sessions are a step toward promoting equitable care for all within the rare disease community, according to the organization.

AADC deficiency is a genetic disease that affects the body’s ability to make certain chemicals that are needed for the nervous system to work properly. This can cause a range of symptoms, such as low muscle tone, delays in development, and restricted growth.

Like most other rare diseases, AADC deficiency has no cure. While there are treatments available that can help manage its symptoms, living with AADC deficiency may mean needing care and support for a long time, sometimes well into adulthood.