Lisa Sherry O’Neill shares her father’s inspiring journey with Refsum Disease, highlighting his resilience, dignity, and impact on medical understanding. Despite blindness and deafness, he lived life fully, supported his family, and inspired others with his strength and optimism.

Kerstin Reichert, diagnosed with rare Refsum syndrome in 2022, found hope through the Global DARE Foundation and the University of Leipzig. She manages her condition with diet, therapies, and weekly apheresis, advocating for awareness and research to improve lives worldwide.

Corina’s journey with Refsum disease highlights her resilience, family support, and hope through the Global DARE Foundation’s advocacy and dietary guidance.

My son Jody was born in New Zealand, a healthy baby boy, following a normal pregnancy. The first year of his life, Jody passed all the important milestones as he should.  But then I discovered he wasn’t eating well or sleeping well at night either. At three years old we were referred to a pediatrician who couldn’t give me any answers, in fact I came away feeling really down. His growth was slow, and many times, people mistakenly thought his brother was the elder son. I took J

Teigan lives in Gippsland Victoria, Australia, and was diagnosed in 2021 with Refsum Disease. Her journey was not an easy one for a young woman, and she graciously agreed to share her story with the Global DARE Foundation. Here is Teigan’s story. When and how were you first diagnosed with Refsum? My name is Teigan. I was diagnosed with Refsum in 2021(at 28 years old). I knew from a young age that I had Retinitis Pigmentosa (RP), and when I was older, I joined some RP Facebook

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...