ERN RITA has published the HAE Patient Journey, mapping the real-life experiences of people living with hereditary angioedema (HAE) across Europe. The online version is available in English here.

Under HAE Junior interviews and patient stories website section, we are pleased to share the story of Laura – an imaginary HAE patient. While fictional, Laura’s story reflects the lived experience of many patients and caregivers who contributed to this project. It illustrates the typical path from first symptoms and diagnostic delays to treatment access and daily disease management.

The Patient Journey was developed following the ERN RITA methodology, based on inputs gathered from HAE patients and caregivers across Europe through multiple focus groups and structured questionnaires. The final version also underwent medical review.

This publication represents an important step towards better understanding HAE patient needs across Europe.