Beyond Achondroplasia

Growing together with Clara

September 23, 2018
by inesp.alves
3 Comments

First day of school – adaptations and challenges

The 17th September 2018 was also a very important day for Clara: it was the first day of school. And what a thrill! And before heading to school that morning, there was a very long process of transition. Clara was … Continue reading

December 6, 2016
by inesp.alves
1 Comment

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

What is quality of life? There is no single definition for Quality of Life, though there have been many attempts to define it. Similar to their definition of health, the World Health Organization’s (WHO) definition is among the most comprehensive … Continue reading

January 27, 2016
by inesp.alves
0 comments

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

This is an old study, but the theme is still current. You can read the full paper here: hill2003 Hill V, Sahhar M, Aitken M, Savarirayan R, Metcalfe S., published this study in 2003, in the American Journal of Medical Genetics. They … Continue reading

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