I participate in these quite regularly through Rare Patient Voice (if anyone wants to sign up, shoot me an email). They are ALWAYS with strict confidentiality. A lot of the time, the people I am speaking with don't even know my name. I do probably 3-4 each year. Not only is the money nice, but usually these are to try to improve lives of patients, and I like to feel that I'm able to contribute to the discussion as to best practices for patients like me.
Would you mind sharing more details about this focus group in an email?
"For this thing I besought the Lord thrice that it depart from me. He said, My grace is sufficient for thee: for my strength is made perfect in weakness. Most gladly therefore will I rather glory in my infirmities; I take pleasure in infirmities, reproaches, necessities, persecutions, distresses, for when I am weak, then am I strong" 2 Cor