There are no established patient groups for Acanthamoeba keratitis. The ODAK project has been working with Moorfields eye hospital patient support team, which host periodic AK suppport meetings in London.
The ODAK project has also facilitated the introduction of this rare disease to the RareConnect community, a patient support initiative connecting AK patients globally to share experiences and connect with other patients.
For more information visit https://www.rareconnect.org/en/community/acanthamoeba-keratitis-ak
There is also a patient run facebook site which offers support to AK sufferers: Search Acanthamoeba Keratitis on Facebook