Patient Support Groups

Being diagnosed with Fabry disease can be challenging. Patient support groups and patient network allow patients to connect, share and collaborate with other patients, carers and family members.

Giving patients to access information about their disease is empowering and a pivotal step in their journey post diagnosis. The following links to patient groups are provided as additional resources for information.

 

Australian patient support groups

Fabry Australia Patient Support Group

Rare Voices Australia

National Smile Foundation

 

International patient support groups and networks

Lysosomal Disease New Zealand – LDNZ

National Organization for Rare Disorders (NORD)

National Fabry Disease Foundation US

Fabry Support and Information Group US

Fabry International Network

Genetic Alliance