Patient Profile/History Category
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You are welcome. It took quite some time for me also before I had figured out this site.
Best wishes,
MarionThanks Marion – I’ve spent so much time in the disussion boards and I didn’t see the “suggestions” or the blogs links – I’m going to check those out…thanks for all the tips.!
I agree tlsinftl – it is helpful when people add a tag line like yours as part of their profile – I immediately know how you came to the site. Sometimes it’s difficult to piece someone’s story together.
Tslinfl…..I like your idea of a patient profile for the same reasons you are addressing. However, this site has grown immensely and I suspect for the content to increase by multifold within the near future. We always are looking to improve the site and welcome suggestions coming our way especially, if posted in the “Suggestion” category. Therefore, keep the ideas coming; they are more than welcome and they will be addressed.
One area somewhat overlooked is the “blog” section. For the present time, it allows for easy to follow messages and responses from others. But, as you have mentioned, postings become lost and we need to find a way of addressing this issue. So, thanks for bringing it up. Together we will find a solution.All my best wishes,
MarionAs I’ve said before, this board continues to be an incredible resource for information. I was thinking the other day….since this terrible disease seems to have such a different impact on people – I wonder if it would be helpful to have a section (maybe in people’s profiles), where they can document their history/treatment/progress.
I think that happens now in the posts, but when doing research it’s sometimes difficult to see how the whole history comes together – which is useful when looking for those “glimmers of hope”. So, I was thinking having an option for people to update their journey in one section might be useful – who knows, given the rarity of the disease it might be useful for researchers as well. Just a thought…not sure who new features get added here.
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