With a focus on rare diseases, inclusion and disability, BookLab publishes scientific books for the public. Our publications are developed in collaboration with scientists, artists and writers. Available in several languages, many of our publications are distributed for free in numerous countries. For more information, download our catalogue.
Living with a Rare Disease Worldwide
Age: All ages
Pagination: 180 pages
Size: 297 x 210 mm
Publication: April 2022
ISBN: 978-2-493373-75-5 (POD) 978-2-493373-74-8 (pdf)
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.
To download only (in English).