I found this article an inspiring one. It investigates patients of rare diseases and their carers and how they contribute with solutions and practices that improve their daily lives.
Given that hundreds of millions of people worldwide are afflicted by rare diseases, patient and their caregivers can be a tremendous source of innovation for many who are similarly afflicted. Our findings suggest that many patients could be greatly assisted by improved diffusion of known solutions and best practices to and among patients and their caregivers."
Thank you for posting the article Tarsius. One of the strengths of this group is members’ willingness to share their discoveries and the ingenuity and striving of individuals to find ways to manage their EM:)
I ended up forgetting to say the most important part - how the people in this wonderful group contribute so beautifully with solutions they come up with or find in a store if they think might help others!