Information for patients, their families and helpers
There is as yet no cure for adult Refsum's disease, but good management of the condition - and especially paying careful attention to diet - can make a lot of difference. Some of the damage which can be caused by adult Refsum's disease is progressive and incurable, which means that catching it as early as possible, getting good advice, and following that advice can make an enormous difference to a patient's quality of life.
It is important to get advice from dieticians and doctors who are experienced in managing this particular condition. This section gives general information about adult Refsum's disease, advice on diet, and a link to the online Refsum Disease Support Network. The Further information section includes lists of centres of expertise on this rare condition.
Page last updated 26 June 2006