Lived vs Learned Experience – The Role of Patients in Research         

lived vs learned experience stephanie ernst writer

I recent wrote an article for Rare Revolution magazine – “Engaging Patients To Shape The Research Of The Future”, explicitly talking about how  the shape of research is changing, with more and more focus now turning to consultation of patient organisations in developing clinical research. 

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Parenting A Rare Disease In The Netherlands.

stephanie ernst writer parenting a rare disease in the netherlands

Parenting is hard. We go through the challenge of falling pregnant, carrying a pregnancy, and then it comes to birth. There are so many choices, so many decisions, and each one makes an impact on our lives. C-section vs vaginal delivery, breastfeeding or bottle-feeding, midwife or obstetrician, homebirth or hospital delivery – the list is endless, and everyone has an opinion on what is best. Parenting a rare disease can be harder.

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What Have You Googled Recently?

stephanie ernst what have you googled

This isn’t a discussion on your search history (so you can all take a breath). Although I’m a big fan of search engines and finding accurate information to help you understand a diagnosis, I also know that a plethora of wrong information is just as accessible.

Patients are often told not to Google things after a discussion with their doctor, and of course, being the humans we are, we will go and do precisely the opposite. (Don’t deny it, we’ve all done it!)

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