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Survey about achondroplasia
We have designed a questionnaire with the purpose to better know the population connected to achondroplasia.
The questionnaire is optional and anonymous. The data obtained will be used for statistical purposes and to better understand the natural history of achondroplasia. Please consider answering.
If you would like to take the survey later, you can click on the link at the top "Register at BA"

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

The Daily Experience of People with Achondroplasia

2017-08-08Psychology and Social
This paper describes the activities perceived as having main roles in the well-being of people with achondroplasia in a small group of members of AISAC – the Italian Association for the Knowledge and Study of Achondroplasia.

Experiences at the time of diagnosis of parents who have a child with a bone dysplasia resulting in short stature

2017-07-05Psychology and Social
An old study about a theme that is still relevant nowadays: experiences at the time of diagnostics. This paper reports a study about how the news about the diagnostics of children with a condition that will result in extreme short stature, such as skeletal dysplasias, are received by the parents and how they wish they would have been given.
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