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PORFIRIAS UNIDAS LATINOAMÉRICA

Estamos comprometidos con mejorar la calidad de vida de las personas que viven con porfiria, y trabajamos para promover la conciencia sobre la enfermedad, así como en impulsar la investigación y el desarrollo de tratamientos para todos los tipos de porfiria.

Links Útiles

  • Buscando un Diagnóstico

    ¿Crees que podrías tener porfiria? Conoce cómo se diagnostica y cómo puedes hacerte las pruebas.

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  • Viviendo con Porfiria

    La porfiria puede afectar muchos aspectos de tu vida. Conoce los recursos disponibles disponibles para ti.

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    Tratando la Porfiria

    Have a patient with porphyria? In-depth resources on the diagnosis, treatment and management of the porphyrias.

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Próximos Eventos

Eventos
International Porphyrias Symposium 2025
oct 9
International Porphyrias Symposium 2025

Save the Date! Explore the clinical manifestations of each porphyria, and the latest advances in their diagnosis, management and treatment, including newly approved and emerging therapies with US and International Experts.

The Latest UPdates

Featured
Spring Sun Safety: Essential Sun Protection Tips for Cutaneous Porphyria Patients
Spring Sun Safety: Essential Sun Protection Tips for Cutaneous Porphyria Patients

Discover science-backed sun protection strategies for cutaneous porphyria (EPP, VP, PCT, CEP & HCP) this spring. Learn about UPF clothing, safe sunscreens, and smart sunlight avoidance techniques.

Living with EPP and Liver Disease: What We Learned from Patients
Living with EPP and Liver Disease: What We Learned from Patients

This study looked at the impact of liver disease on people with EPP by comparing the experiences of EPP patients with and without liver disease.

Recommendations for Hemin Preparation and Infusion
Recommendations for Hemin Preparation and Infusion

Question: Is there a way to make Panhematin infusions more comfortable? 

Meet Lina Rebeiz, Porphyria Community Builder
Meet Lina Rebeiz, Porphyria Community Builder

"Things are so different once you meet other patients with porphyria"

Aprende más sobre tu porfiria

Porfirias Hepáticas Agudas

Porfirias cutáneas

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  • Get your questions answered

    Our Patient Navigator can help you find porphyria specialist, access testing and treatments, and get your porphyria questions answered.

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  • Find others who know what it's like

    Connect regularly with small group of your peers! Groups are created around diagnosis and particular experiences/needs.

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  • Talk one-on-one

    Connect with a UPA Ambassador who understands what you're going through, because they've been there too.

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