Jody's Story My son Jody was born in New Zealand, a healthy baby boy, following a normal pregnancy. The first year of his life, Jody...

Teigan’s Story Tiegan lives in Gippsland Victoria, Australia, and was diagnosed in 2021 with Refsum Disease. Her journey was not an easy...

Raising awareness about Refsum Disease is the key to early diagnosis and better patient outcomes. And we did just that in Thailand last...

Global DARE Australian Ambassador Sharon Burstin recently achieved a milestone by having her case study featured.

Khadija and Adam are siblings who share very different stories based on early testing and diagnosis for Refsum Disease.  Khadija was...

Richard was 26 years old when on a holiday camping and trekking in Wales he noticed that the backs of his legs had become tight and...