for participating in this topic. You have brought up some excellent points.
About the sharing of information, please keep in mind that not all cases are alike. Although having multiple surgeries and radiotherapy worked for me, I cannot suggest that this is what every person with my rare cancer needs. Some will need much more than that, depending on the body site, size, growth rate, etc. of their tumor. But, I can
share my own story and if many people with my diagnosis do the same thing, then at least the newly diagnosed members can go to their initial appointments armed with good questions.
About the Moderators, buddies, etc.; at the top of each Rare Cancer Alliance forum is an announcement asking for volunteers to be Moderators. I took the one off of the Phyllodes, but have entered it again today. I agree with you. Help for the newly diagnosed is the primary purpose of these forums and this website. Always has been. But, I cannot force others to volunteer.
We do have one forum (Anal Cancer) that runs exactly the way that you mentioned because there are several volunteers helping there. And, because that help is there, it is a very active forum where information is shared openly. It is a great example of what support, person to person, can accomplish in the rare cancer community.
About the website building; I started a blog section for the website a few years ago and tried to get people to participate in that. They could have their own blog, with their own journey stories that would be of interest for their diagnosis. I got absolutely zero participation. So, creating a website might not be useful to others. Honestly, it is hard enough for me to get people to volunteer to tell their stories publicly (see the website and forums stories sections).
Keep in mind that regular cancer organizations do not necessarily represent rare cancers. Money that is given to the ACS, for instance, does not go to research for rare cancers. And, many of the general websites out there have very general info, if any, for rare cancers. If you look through the forums here that have had good participation, you will find some very detailed info.
Your suggestions have been my 'ideal dream' since I started this website in 1998. But, things have not worked out that way.....