NEWS
Lanzamiento de TRADUCCIÓN DE NAPOS AL ESPAÑOL, un cambio histórico para nuestra comunidad
Hoy, en el Día Mundial de la Porfiria, celebramos un avance histórico para toda Iberoamérica: el lanzamiento oficial de la versión en español de NAPOS. Sabemos que en un momento de crisis, el idioma no debería ser una barrera para recibir atención médica segura. A partir de hoy, los pacientes y médicos de habla hispana cuentan con una base de datos de medicamentos confiable, rápida y totalmente traducida, eliminando cualquier margen de error por interpretación.
Esta actualización es una respuesta directa a las necesidades de nuestra comunidad. Con solo consultar tu teléfono, podrás verificar instantáneamente si un fármaco es seguro o peligroso durante un ataque. Te invitamos a utilizar esta herramienta hoy mismo y a compartirla con tus especialistas. ¡Llevamos la seguridad médica a cada rincón de habla hispana!
Rarity life magazine #13 - summer 2025
This powerful edition of Rarity Life brings together real stories, experiences and voices from across the rare disease, disability and cancer communities.
This powerful edition features the work of the British Porphyria Association (BPA), led by co-CEOs Liz Gill and Sue Burrell (GPAC President) which shares their personal experiences of living with acute recurrent porphyria and explores the hope brought by gene-silencing treatments.
A heartfelt thank you to Rarity Life for creating such a meaningful platform and to everyone who reads, shares and supports these stories.
Check out the article on pages 28-32 and explore the full magazine below! 👇
Rarity life magazine #13 - summer 2025
This powerful edition of Rarity Life brings together real stories, experiences and voices from across the rare disease, disability and cancer communities.
This powerful edition features the work of the British Porphyria Association (BPA), led by co-CEOs Liz Gill and Sue Burrell (GPAC President) which shares their personal experiences of living with acute recurrent porphyria and explores the hope brought by gene-silencing treatments.
A heartfelt thank you to Rarity Life for creating such a meaningful platform and to everyone who reads, shares and supports these stories.
Check out the article on pages 28-32 and explore the full magazine below! 👇
Rarity life magazine #13 - summer 2025
This powerful edition of Rarity Life brings together real stories, experiences and voices from across the rare disease, disability and cancer communities.
This powerful edition features the work of the British Porphyria Association (BPA), led by co-CEOs Liz Gill and Sue Burrell (GPAC President) which shares their personal experiences of living with acute recurrent porphyria and explores the hope brought by gene-silencing treatments.
A heartfelt thank you to Rarity Life for creating such a meaningful platform and to everyone who reads, shares and supports these stories.
Check out the article on pages 28-32 and explore the full magazine below! 👇
