Living with a Rare Disease Worldwide. Volume 1

This book was produced with the help of the National Press Foundation, which selected and trained 20 international journalists from all continents. These journalists took part in 2 days of training on rare diseases (diagnosis, treatment, therapy) in order to better report this topic to the general public. They have produced one or more articles (written press, video or podcast), published in their respective newspapers. All of this work educate on how patients, around the world, live with a rare disease. As these pages go along, we realize that poverty does not allow patients to access primary care. Moreover, beliefs sometimes lead to the exclusion and stigmatization of patients.

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