Dr Sondra Butterworth is the founder of the EDIRA project. Sondra’s research was based on exploring the relationship between Quality of Life and Social support for adults living with rare conditions. At the end of her PhD studies, she concluded that, the narrative stories of the participant’s lived experience, clearly and most definitely indicated that they were not only underserved, but often excluded.
We are very thankful for to our sponsors Couch Health. Without support from our sponsors we would not have been able to put on our successful EDIRA conference.
To read the conference report, click on the picture or follow the link HERE