Can an educated patient with a rare disease present and publish self researched interventions?

No. You are describing a case study. You are the case, not the scientist. Just because you are not bound by professional ethics does not mean that conference attendees are not either. If your medical team has backed away, then that is the “educated” opinion on the issue.

The best way to share info like this with other patients is with a blog post or post to a relevant discussion board. “Other patients” will not get information from a conference. And honestly, a single patient does not indicate “success”. Otherwise I would be famous for my revolutionary chocolate chip cookie diet. Replication under controlled conditions would indicate success.

It is admirable that you want to share your lifestyle with people, especially since it sounds like you have a pretty crappy health condition. Save your money - unless it is a conference that draws a lot of community-based attendees (but most scientific conferences do not). You will be able to make the biggest difference through grassroots activity.

/r/AskAcademia Thread