Latinos & Rare Diseases

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The National Organization for Rare Disorders (NORD) and Children’s Hospital at Montefiore (CHAM) are hosting in-person listening sessions for Latino people affected by rare diseases. NORD has been a leader in rare disease patient advocacy for 40 years under the guiding belief that every person living with a rare disease has a right to their best health and well-being. The Division of Genetics at CHAM, one of the oldest and best known in the country, has provided family-centered care for infants, children, and adults with genetic diseases, birth defects, and congenital malformations since 1968.

Our shared goal is to hear stories from Latino rare disease patients, families, and caregivers to better understand their experiences with barriers to health care, diagnosis, and therapies. Our learnings from this listening session will be used to raise awareness around challenges faced by this community, and will inform the development of tools, programs, and support services to improve access to care and quality of life for Latino people impacted by rare disease in the United States.

Personal information such as name and phone number will remain confidential and will not be shared with any third parties.

If you are interested in attending our listening session at CHAM, please fill out this form. We want to hear from you!