No person left behind, no matter where they live
47 millones de personas en Iberoamérica viven con enfermedades raras, enfrentando demoras diagnósticas de 8-9 años y barreras de acceso a tratamientos según su ubicación geográfica. La XVII Conferencia Iberoamericana en Madrid estableció un decálogo de prioridades alineado con la OMS, enfocado en reducir retrasos diagnósticos, fortalecer cribado neonatal y crear centros de referencia.
- 47 million people in Iberoamerica live with rare diseases
- Diagnostic delays average 8-9 years in the region
- 70% of rare diseases begin in childhood
- ALIBER represents 700+ patient organizations across 19 countries
- More than 7,000 distinct rare diseases have been identified globally
Iberoamérica reconoce oficialmente las enfermedades raras como prioridad sanitaria, con 47 millones de afectados enfrentando diagnósticos tardíos y acceso desigual a tratamientos. Autoridades sanitarias y organizaciones de pacientes impulsan un decálogo de prioridades para reducir demoras y garantizar equidad.
Forty-seven million people across Latin America and Spain live with rare diseases—conditions so uncommon that fewer than one in two thousand people in the general population will ever encounter them. Most of these illnesses begin in childhood. Many are progressive, multisystemic, capable of causing severe disability and early death. Yet for decades, they have been treated as afterthoughts in regional health policy, invisible in budget allocations and political priorities. That changed in May when health ministers from seventeen Iberoamerican countries gathered in Madrid and formally elevated rare diseases to a regional health priority.
The moment carried symbolic weight. Queen Letizia of Spain presided over the institutional ceremony at the XVII Iberoamerican Conference of Health Ministers, reaffirming her long-standing commitment to the issue and highlighting ALIBER—the Iberoamerican Alliance for Rare Diseases—a network of more than seven hundred patient organizations spanning nineteen countries. The conference represented the culmination of years of advocacy by patient groups, medical experts, and a handful of governments determined to translate global recognition from the World Health Organization into actual policy changes that would reach the people living with these conditions.
The barriers facing patients and families are structural and relentless. The World Health Organization identifies more than seven thousand distinct rare diseases; seventy percent emerge before adulthood. Beyond the medical complexity, people living with rare diseases encounter discrimination, social isolation, and economic hardship. They face educational obstacles, employment discrimination, and difficulty accessing mental health services. Women and children experience disproportionate delays in diagnosis and treatment. In Iberoamerica, the average time from symptom onset to diagnosis stretches between eight and nine years—a period of uncertainty that compounds the physical toll and often allows treatable conditions to worsen irreversibly. Geographic location and socioeconomic status determine access to care; a patient in a rural area or a lower-income neighborhood faces longer waits and fewer options than one in an urban center.
Juan Carrión, president of both ALIBER and Spain's Federation of Rare Diseases, presented these figures to the assembled ministers. Alongside vice presidents Jesús Navarro and Luz Victoria Salazar, he outlined the scale of the challenge: nearly fifty million people in the region living with conditions that most doctors will never see, navigating systems unprepared to recognize or treat them. Spain's Health Minister Mónica García, a key architect of the WHO resolution on rare diseases, stressed the urgency of embedding these conditions into national health and social protection policies through multidimensional, inclusive strategies.
The conference produced a concrete deliverable: a ten-point Iberoamerican Declaration of Priorities, aligned with WHO guidance and launched the previous October. The document identifies specific targets: reducing diagnostic delays, strengthening newborn screening programs, establishing specialized reference centers, advancing research, and guaranteeing equitable access to therapies and medications. At its core lies a commitment to universal health coverage—ensuring that all people can obtain essential health services and medicines without financial hardship, without discrimination, without regard to where they live or how much money their families have.
Andrés Allamand, secretary general of the Iberoamerican General Secretariat, emphasized the importance of unified definitions across the region, a foundation for coordinated legislation and action. The alliance proposes building a cooperation network that addresses diagnosis, data sharing, and treatment access—benefits flowing not only to patients but to families and caregivers bearing the invisible weight of these illnesses.
Carrión captured the moral dimension in a single sentence: "Speaking of rare diseases is speaking of equity, of dignity, and of ensuring that no person is left behind, no matter where they live." The recognition achieved in Madrid represents a decisive step—not the endpoint, but a turning point. Millions of patients and their families have waited years for this institutional acknowledgment. Now the work of implementation begins: translating policy into practice, closing the gaps between countries and within them, and ensuring that the next child born with a rare disease in rural Guatemala or a neighborhood in Buenos Aires receives the same quality of diagnosis and care as one in Madrid.
Citações Notáveis
Speaking of rare diseases is speaking of equity, of dignity, and of ensuring that no person is left behind, no matter where they live.— Juan Carrión, president of ALIBER and Spain's Federation of Rare Diseases
The need to advance toward national strategies that address the challenge from a multidimensional and inclusive approach.— Mónica García, Spain's Health Minister
A Conversa do Hearth Outra perspectiva sobre a história
Why did it take until 2026 for Iberoamerica to formally recognize rare diseases as a health priority?
These conditions affect fewer than one in two thousand people—they're genuinely uncommon. When health systems are stretched thin, rare diseases become invisible. It took patient organizations building networks across nineteen countries, sustained pressure on governments, and alignment with WHO guidance to make the case that equity means protecting even the smallest populations.
The eight to nine year diagnostic delay—that's not just an inconvenience, is it?
It's devastating. A child with a progressive neurological disease loses years of potential treatment. Families exhaust themselves seeking answers. The condition worsens. By the time diagnosis arrives, irreversible damage has occurred. That delay is the difference between managing a disease and being destroyed by it.
What makes women and children particularly vulnerable in this system?
Women often have their symptoms dismissed or attributed to psychological causes. Children depend entirely on adults to navigate systems that don't recognize their condition. Both groups have less power to demand attention, less access to information, fewer resources to travel for specialized care.
The declaration mentions equitable access to medicines. How realistic is that in countries with limited health budgets?
It requires political will and regional cooperation. The alliance proposes sharing data, coordinating research, pooling resources. One country alone can't negotiate drug prices or build specialized centers. Together, they have leverage. It's not easy, but it's the only path that works.
What happens if governments sign the declaration and then do nothing?
That's the real test ahead. The patient organizations will be watching. They've built visibility and momentum. Broken promises now would be worse than silence—it would be betrayal.