People keep asking where they can find a community for their disease. I often don’t have an answer, so it’s time to get to work, collecting information so patients in trouble can find what they need.
As a start, I’ve added a new page to this website: ePatientDave.com/communities. It’s a very preliminary, very partial list of places to go if you want to find a patient community for your disease.
So far it only includes two resources: ACOR and Webicina. (For details, see the page.)
I don’t intend for this page to be the world’s best list, but we need such a list SOMEwhere, and this will at least be a first start, eager to be replaced by something better. (Perhaps it will be an enhanced Webicina list; who knows.)
Thanks to Non-Hodgkins Lymphoma patient Virgil Miller, whose comment on last week’s post led me to finally do this. Virgil, you’ll find that ACOR has a community for your disease.
What a database of communities should be, ultimately:
We should have a real, robust, searchable database of patient communities, with information such as:
- Disease (so you can enter a disease name and find all known communities)
- Type: web forum, blog, website, etc.
- Whether it’s accessible by email
- Number of members
It should list communities all kinds of conditions, not just cancer: diabetes, rheumatoid arthritis, everything.
Once it exists, people will develop mobile apps, so you can get at the database more easily. Etc etc. (Did I mention it should be open source and wiki-editable?)
PLEASE DON’T SUBMIT YOUR SUGGESTIONS HERE. PLEASE SUBMIT THEM ON THE PAGE ITSELF. :–)