My son is epileptic and I used to find the Reddit community was great for asking questions.
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Here you can search for Commnunitys across (almost) all instances: https://lemmyverse.net/communities This exists: https://lemmy.ml/c/epilepsy But it still seems to look inactive
I believe you’d be welcome at !neurodegdissupport@lemmy.world. I’m a co-mod. We’ve got Alzheimer’s, Huntington’s and MS represented among the active and vocal participants. Yes, I know epilepsy isn’t technically “degenerative,” but it is neurological.