Okay, everyone, PLEASE join in and perhaps bombard these websites:

http://www.cdc.gov/az/azfaq.html#suggest

http://www.hhs.gov/feedback.html

http://feedback.nih.gov/

https://info.ahrq.gov/cgi-bin/ahrq.cfg/p...ubCZwX3BhZ2U9MQ!!
created acct after I finished the ask a question form. Only way to submit question.

http://www.healthfinder.gov/aboutus/contactus.aspx

We will have more of a chance with more people speaking up!

Not that I want everyone to know my medical issues, I wanted to copy what I wrote for those of you who need an idea:

"Please consider including a disease that takes several forms in your database: Dupuytrens, Ledderhose, Peyronies, Frozen Shoulder, Knuckle Pads.
Also please consider adding a link to http://www.dupuytren-online.info/index.html because this is only website to date, that even covers any options or information!
I hate to think I have survived a heart attack and cancer, only to lose my ability to walk because of this disease! Thank you!"

We need to have a united voice, and we need someone to become a "public spokesperson" for us!Please can someone help find us someone?

Thanks! Debbie