Foundation Fighting Blindness (FFB) is helping Global DARE Foundation raise awareness to Refsum disease by building out an informative Refsum Disease page on their website (see at the link below). Hopefully this will help patients get an earlier diagnosis and help them connect with our foundation for additional support.
FFB is a tremendous resource and have some great programs. Definitely check them out! Thank you FFB!
https://www.fightingblindness.org/diseases/refsum-disease#living