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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"

A documentary on the lengthening process

2018-06-05Social
Watch the documentary "The Lucas's Journey", about the limb lengthening process of a boy with achondroplasia here.

Achondroplasia Personal Life Experience Scale (APLES) - A Patient-reported Outcome Instrument for Young People With Achondroplasia

2018-04-02Social
Patient-reported outcomes instruments are questionnaires that assess an individual's perception of his/her Health-Related Quality of Life (HRQoL), which includes their perception of their physical, emotional, mental, and social states. A paper on the development of a questionnaire to assess the HRQoL of people with achondroplasia.

Assessing Health-related Quality of Life (HRQoL) in achondroplasia

2016-12-06Social
Skeletal dysplasias affect multiple organ systems, but how does that influence the way people who have these diseases see themselves and their lives? This paper aims to quantify the quality of life of people with short stature skeletal dysplasias through a survey.
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