As someone with a less rare disease, I can say a bigger danger is getting a very negative picture about your condition. The people that are very active in these

As someone with a less rare disease, I can say a bigger danger is getting a very negative picture about your condition. The people that are very active in these communities are often the ones that are dealing with the disease more often due to severity (i.e. those that are dealing with the disease fine are often not seeking out these communities). This creates a selection bias that can give you a very negative picture of your prospects that doesn't correlate well with reality. I'm not saying that these communities are bad. You just have to take everything into consideration when dealing with them.