Federacion Costarricense De Enfermedades Raras (Costa Rica)

Costa Rica

Ruta Nacional Primaria 10, Cartago, Provincia de Cartago, Costa Rica

Email

50671082515

Nancy Elena Rivas Elizondo

The FEDERACION COSTARRICENSE DE ENFERMEDADES RARAS is an umbrella organization in charge of providing comprehensive support to rare disease patient organizations and their families, offering resources, information and guidance to face the challenges associated with rare diseases, strengthening the capacities of leaders of rare disease organizations, providing training programs, advice and mentoring to improve their capacity to support people with rare diseases and influence public health policies related to rare diseases, advocating for the rights and needs of patients and their families. They aim to reduce stigma and promote greater understanding and solidarity towards patients. They have eleven affiliated organizations and approximately two hundred patients with rare or ultra-rare diseases.