Your newborn child is finally here, but when you discover that all is not as it should be, what do you do? – When your child is diagnosed with a rare condition, there are so many things that go through your head. OIFE recommends the publication “Guide for parents after diagnosis” to parents after they…
Can we be unhappy or do we keep on with that unbreakable spirit which people with OI all seem to have? Why do we want to be so happy? Think about this with me for a while! Imagine: you were a 2 year old toddler and your mother or father asks you to draw something…
In 2019 Care4BrittleBones would like to build up a network to foster knowledge exchange around psychosocial aspects of OI. The network will be led by Dr. Kara Ayers (photo) from Cincinnati children’s hospital, USA and Dr. Claire Hill from Sheffield’s children hospital, UK. The purpose of the network is to explore key topics of shared…
Interview with Rubén Muñoz Cortés, psychologist of Fundación AHUCE Who are you? I am Rubén Muñoz Cortés. I live in Valencia, Spain. I am a psychologist with a Master’s Degree in Clinical Psychology and Neuropsychology. I am a PhD candidate in Clinical and Health Psychology at the University of Valencia. Throughout my career, I have…
