Hereditary amyloidosis is drawing attention in Peru with a key symposium that brings together specialists, patients, and authorities to expose the severe gaps in its diagnosis and treatment. This event, scheduled for January 19, 2026, aims to raise awareness of a rare disease that impacts more than 2 million Peruvians with orphan conditions, according to local estimates.
Transthyretin hereditary amyloidosis is a progressive genetic pathology that damages peripheral nerves and the heart. Without early intervention, it causes severe disability, dependency, and premature death. Although approved therapies exist internationally, in Peru they are not integrated into the public system, leaving patients in a race against time. Karla Ruiz de Castilla, director of Esperantra, warns: “Hereditary amyloidosis progresses while patients wait. Making this gap visible is urgent, because lost time means disability and loss of life.”
Event details at Congress
The symposium “Hereditary amyloidosis – Making Rare Diseases Visible in Peru” will take place at 9:00 a.m. in the Alberto Andrade Carmona Auditorium of the Congress of the Republic. Organized by the office of Congressman Alejandro Aguinaga Recuenco and co-organized by Esperantra and the Ibero-American Alliance for Rare Diseases (ALIBER), it will feature speakers such as cardiologist Dr. Javier Torres from the Edgardo Rebagliati Hospital, geneticist Dr. Jorge La Serna, and directors from MINSA and INS.
Bill to close gaps
- Presentation of Bill No. 11344/2024-CR, promoted by Aguinaga, to strengthen Health Technology Assessment.
- Focus on equitable access to oncological and high-cost treatments, including hereditary amyloidosis.
- Patient testimonies will highlight the daily impact of the disease.
In a global context, hereditary amyloidosis affects about 50,000 people worldwide, with diagnoses delayed by up to 4-5 years on average, according to data from the European Organisation for Rare Diseases. In Latin America, similar initiatives in Brazil and Mexico have driven public policies, reducing access times to therapies such as tafamidis. In Peru, where 80% of rare diseases lack coverage, this forum could set a precedent.
Importance for the diaspora and regional health
For Dominican communities in Peru and the diaspora, this debate highlights shared challenges in rare diseases. Authorities such as Dr. Luis Gamero from DENOT-MINSA emphasize evidence-based and sustainable solutions. The event not only analyzes gaps in early diagnosis and health assessment, but also promotes concrete responses.
Hereditary amyloidosis demands immediate action. This symposium unites voices to transform realities, prioritizing equity in access to vital treatments and preventing avoidable tragedies in Peru.
