I keep on figuring out how to delay the progression and provide a cure for patients with Wolfram syndrome. In parallel, I keep on thinking about how we can improve the quality of life of our patients. One of the possibilities is to create a platform where patients can share their experiences. There are multiple non-profit and for-profit organizations working on this. Patients-like-me is one of them.
http://www.patientslikeme.com/
I am willing to donate our data from our patients to this type of organization. Of course, the data should be de-identified. If it is difficult to do it because of all the regulations, I am willing to help people create such a platform. By connecting each other, we would feel empowered, I think.
Thank you for reading this blog. I hope you will have a wonderful weekend. Kindly, Fumi