|My ECRD Berlin 2014 Word Cloud|
Storytelling for Health”, made it possible to connect with many people who expressed a genuine interest in the role of stories, beyond the typical lip service given to the need for patient voice. I was actually left with the strong conference impression, that in Europe, the patient community is in fact at the front and centre of the rare diseases movement, which is surprisingly not always the case. The opening plenary session presented a number of individual patient video stories to illustrate the key conference themes that would be discussed. There was also not just strong attendance from patient organizations, including patients and caregivers, but also many speakers from the patient community, with a variety of relevant workshop topics to select from, versus the typical single non-scientific option (lack of option). Slides from all the presentations have now been made available on the conference website. This is an incredible offering for those who were unable to attend or, if like me, you found sessions of great interest to be overlapping in the scheduling. Many of the posters presented are also accessible online.
• From Life Stories to the Healthcare System: Narrative Medicine and Rare Diseases
• Pegasus, a winged horse carries hopes for rare diseases
• The Videotale ’Con Gli Occhi Tuoi’ (Through Your Eyes): An Alternative Method of Communication in Rare Diseases
Mauricio of Uruguay, and with it, the fruitful introduction to the life, art and illness narrative of artist Mauricio Saravia. Don’t miss the incredible story of the boy who had to have the weeds inside his body pruned.
I’ll also add that, from awareness gained by conference attendance, I've signed up and started the online European Patient Ambassador Program. This free educational program is great training for strengthening your voice as an informed patient advocate.
Many thanks to the National Gaucher Foundation of Canada for making this venture possible.
-post by Emma Rooney