When we were first diagnosed, I searched for a place to discuss NB and get advice. There was really nothing public out there.
Existing discussions are hidden behind private groups (in Facebook) or ancient and mixed with general oncology forums (I could not even find active forums for children’s oncology)
Getting advice early on is crucial, especially in the US where there are quite a few options for the newly diagnosed (MSK vs COG vs other trials etc.)
Publicly searchable advice is crucial for our community and will help a lot of people.
Knowing there is a safe place to talk about stuff is also crucial.
Some of us are fine sharing names and pictures (as you can see in the welcome topic) - some are not. Both is ok.
It is 100% fine not to post pictures and to go by an anonymous alias. It is not a prerequisite to give out your name or the name of your kid to get advice.
Furthermore, the forum software opens up a bunch of possibility when it comes to privacy, which we are open to exploring.
We have private messaging enabled so you can contact other members directly (you may disable this in your profile if you wish)
We can create categories that are only visible to a subset of members, or categories that are only visible to logged on users (so Google can not index)
Let us know what you think either by sending me or @KyleMatthews a message or replying here