I'm working on a project to create something that could have the ability to change lives of people like us, but I would like to know - what would help you?
More awareness by the medical community and more research, surely. For that, we need patient/advocate groups in the US. If you check Genetic and Rare Diseases Website along with National Organization with Rare Disorders Website- the Directors even suggest that the the future of treatment/cures for any particular rare disease lies in patient advocate organizations, so that should be the priority. You can check thousands of rare disease patient organizations who initiate the research movement by simply creating these organizations. Now I don't know if that is what Jeff Abugel is trying to do with IDS, he seems to go in that direction, it is pretty amazing that he is organizing a conference in NYC this year, followed by others that brings together researchers and patients, but he obviously needs to work with young people who would be able to use social media tools to attract more people into the supporting groups and such,it doesn't really give an active-professional image, the way he is presenting IDS and his website. If only I were from the US, Canada or the UK to some extent, I would be initiating a project myself in this regard, but honestly it is especially these countries that would change the future of depersonalization/derealization treatments (in terms of funding opportunities and the quality of scientists), and any other rare disease for that matter. So, hope you can also consider these information
