From Rare to Recognized": Women in Rare launches national survey on causes and impact of diagnostic delays on people with rare diseases and caregivers.

Now in its second year, this project is conceived and promoted by Alexion, AstraZeneca Rare Disease, in partnership with Uniamo - Italian Federation of Rare Diseases, in collaboration with Fondazione Onda, Censis, and Altems. It was created to investigate the impact of rare diseases on women's lives, both as patients and caregivers, and to do so, it relies on the contribution of a Scientific Committee composed of experts from various rare disease specialties and institutional representatives. The survey aims to analyze various factors that can influence diagnostic delays—such as education, employment, geographic location, and gender differences. Particular attention will be paid to the latter: the goal is to understand whether—all other things being equal—being a woman places a further disadvantage in obtaining a diagnosis. The questionnaire is available on the Uniamo website until August 8th, and then from September 15th to October 17th, 2025.