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.