The Rare Diseases Unit at the Hospital de Especialidades Portoviejo has completed its first year of operation. The anniversary event took place on February 28, 2025, aligning with World Rare Disease Day. The hospital auditorium was used to bring together patients, families, medical specialists, and provincial authorities to discuss the challenges and progress in treating rare diseases.
Dolores Loor, a neurology specialist and head of the unit, said that this service is “a firm step in consolidating specialized and patient-centered care,” reaffirming the institution’s commitment to comprehensive and humane treatment.
The program included academic presentations, patient testimonies, and discussion forums focused on sharing experiences and advances in diagnosis and treatment. Activities for families were also held to encourage emotional expression and mutual support.
Unlike other hospital services with high demand, the number of patients treated by this unit reflects the rarity of these conditions. Each case requires thorough diagnosis and ongoing monitoring.
Dalila Muñoz, medical director of assistance services, explained that success is measured not by volume but by precision and multidisciplinary support. She stated: “Our priority is the quality of timely treatment. Because these are low-prevalence diseases, each patient requires coordinated effort from multiple specialists to ensure their quality of life.” Muñoz also noted that the unit provides comprehensive support for autism and Parkinson’s cases.
Currently, the unit monitors several groups: 74 patients with myasthenia gravis receive quarterly consultations; 102 patients with refractory epilepsy follow advanced control protocols; 203 patients with movement disorders are under continuous observation; 30 children with hemophilia are managed through pediatric subspecialties; specific groups diagnosed with multiple sclerosis (14), neuromyelitis optica (14), and muscular dystrophy (16) also receive care.
Silvia Rezabala, a hospital user living with a rare disease for eight years, shared: “I have faced my illness for eight years, and the human and professional quality of this team has been fundamental. Their dedication gives us strength to keep going.”
After one year in operation, the Rare Diseases Unit has become an important part of Ecuador’s public health system. The Ministry of Public Health has expressed its continued commitment to providing responsible care for those affected by rare diseases.
