As someone who suffers from a rare disease I have to be skeptical about whose information I trust. I tend to rely more on scientific papers and resources like PubMed. Many times you hit a paywall but with some good searching techniques you can usually find the full articles/publications for free.
As for my disease there is some very good scientific information out there and I have even found that there is an experimental procedure using stem cells (hematopoietic cell transfer) that could potentially cure me. The main problem is that there is a lot of misinformation on the Internet about stem cell transplants. There are a lot of places that are taking advantage of "medical tourism" revolving around stem cell transplants. These places are giving patients false hopes by providing a version of stem cell transplant that is IMHO not effective. You need to make sure to validate your findings and stick to respectable scientific sources. If someone is saying they have an amazing cure it is most likely snake oil.
As for my disease there is some very good scientific information out there and I have even found that there is an experimental procedure using stem cells (hematopoietic cell transfer) that could potentially cure me. The main problem is that there is a lot of misinformation on the Internet about stem cell transplants. There are a lot of places that are taking advantage of "medical tourism" revolving around stem cell transplants. These places are giving patients false hopes by providing a version of stem cell transplant that is IMHO not effective. You need to make sure to validate your findings and stick to respectable scientific sources. If someone is saying they have an amazing cure it is most likely snake oil.