Rio de Janeiro opens specialized care center for epidermolysis bullosa

The Rio de Janeiro State Health Secretariat (SES-RJ) has launched a specialized care center for individuals with epidermolysis bullosa, a rare disease characterized by extreme skin and mucosal fragility. Located at the Instituto de Assistência dos Servidores do Estado do Rio de Janeiro (Iaserj) in Maracanã, the center provides multidisciplinary support including dermatology, pediatric dermatology, nursing, speech therapy, psychology, and social work.

The facility aims to offer integral care, addressing not only physical lesions but also nutrition, pain management, emotional health, and social complications. The first patient to receive treatment at the center was 13-year-old Alícya Jeremias.

In Brazil, rare diseases are defined as conditions affecting up to 65 in every 100,000 individuals. With over 7,000 different rare conditions existing, many patients face significant challenges regarding diagnosis, specialized treatments, and long-term quality of life, often requiring continuous multidisciplinary support and assistive technologies.