From time to time I post a request from someone who seeks a community of patients for a particular condition. I’ve been accumulating them on the communities page on this site. Sure wish we had a grant to grow a list and manage it well! How many people would THAT help??
This one is from a person who’s had mild epilepsy symptoms for years. It’s been well managed, allowing normal life, but it may be time to look for “what’s next” sorts of treatments. So, in addition to working with their medicos, the family’s wondering about astute patient communities.
I know about the one at PatientsLikeMe. Any others?