NORD to offer ‘Latino/a/x Listening Sessions’ in US on rare disease

The National Organization for Rare Disorders (NORD) is hosting community listening sessions for Latino and Spanish-speaking people in the U.S. living with rare diseases, such as Lambert-Eaton myasthenic syndrome (LEMS).

The series of in-person and virtual meetings — called “Latino/a/x & Hispanohablantes Community Listening Sessions” — will be held from April through June. Hispanohablantes means Spanish speakers.

Through the forums, the rare disease organization wants to better understand the experiences of Latino people in being diagnosed and living with a rare disease, as well as the barriers these patients face related to healthcare, diagnosis, and treatments.

Besides raising awareness around the difficulties faced by Latino people with rare diseases, the listening sessions will inform and support the development of tools, programs, and services to improve access to healthcare for this patient population. These listening sessions are private events, and all shared information will remain confidential, according to NORD.

“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,” NORD said in a press release. The release also is available in Spanish.

Starting April 22, and running through May 17, four in-person sessions will be held in New York City, Washington, D.C., Lanham, Maryland, and Houston. Virtual sessions will take place online in May and June for communities in New York City, the D.C. metro area, and Houston, with a nation session — for patients and caregivers across the U.S. — slated for June 1.

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.

Due to limited availability, registration — in English or Spanish — is required for people wishing to attend the listening sessions in person. Compensation will be provided in these cases. In-person sessions also are family-friendly events open to relatives of registered individuals, with games for kids, food, and free NORD merchandise.

For questions about NORD’s Latino and Spanish-speaking engagement programs, contact [email protected].

“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 nonprofit says on the event’s webpage.

Estimated to affect about 400 people in the U.S. and 2.8 million globally, LEMS is a rare autoimmune disease characterized by muscle weakness, fatigue, and lack of reflexes, as well as vision, speech, and swallowing problems. LEMS is caused by a self-directed immune attack against a specific type of calcium channel found in nerve cells that helps control muscle movement. In about half of all cases, it’s associated with an underlying cancer.

While there is no cure for LEMS, there are treatments available that can help restore nerve-muscle communication and ease disease symptoms.