They are data mining a wide range of information from people from the public they are not entitled to have and would otherwise not have access to. They want it for their own use, sale, leverage, etc. This org is large, professionally connected and heavily funded, including from research sources. They are quite legitimate. But they use people falling under their scope of focus as a data farm in exchange for information and the ability to connection with others. They DO provide valuable assistance, direction and information. But recipients pay a high cost for it. Some may not mind. But I'm not one of those people, at this point. I hit my threshold when they required downloading a funky 2nd rate app right before the conference, and having to provide certain information to also this 3rd party in order to view a conference. After I begrudgingly did even that, creating an account with them too, I still couldn't view. The org didn't provide a link. They passed access off to an online service where you needed to provide addtl disclosure + establish another acct with them. They sprung this on registrants at the last minute- slightly before the long promoted conference started! A final hoop at the last minute. More data given to some unknown online app service. I realized my personal+ medical data is the price of admission. And I don't like it. I want this type of coercive privacy violation stopped. It's a form of abuse of sick people, many without hope or options. It's exploitation. It's offensive to me. We're sick and many, dying people. We're not 'data' in a data farm. I felt desperate when I first had contact with them, as many do. But now I feel somewhat preyed upon and it doesn't feel good. If they get a penny of federal funding, which they likely do, they will be accountable for their approach of withholding their help and new medical knowledge from desperate people unless the people surrender extensive personal and medical privileged information ...aka DATA.