Understanding the language & culture around achondroplasia
2020-11-01Psychology and Social
As long a population uses a language to communicate, this language will be a "live entity", that will evolve by losing words and creating new ones. When still in the 21st Century, people keep using words that carry centuries of negative interpretations, unaware of these words origin or related meanings, this is a missed opportunity to do a positive change and actually improve the way people with skeletal dysplasias (including achondroplasia) are seen, respected and valued in society.
APLES – The Achondroplasia Personal Life Experience Scale
2020-08-11Psychology and Social
APLES – The Achondroplasia Personal Life Experience Scale – Development of a Questionnaire to Assess Quality of Life, Burden of Disease and Functionality of Children with Achondroplasia