Support Groups

Being diagnosed with Pompe disease can be challenging for new patients.

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 and New Zealand patient support groups 
 

Australian Pompe Association (APA)
The APA is dedicated to supporting the needs of Australian Pompe disease patients, their families and carers. 

Lysosomal Disease New Zealand – LDNZ 

Rare Voices Australia 

 

International patient support groups and networks
 

International Pompe Association (IPA)
A federation of Pompe disease patient groups worldwide, the IPA provides referrals to patient group contacts in different countries, organizes international conferences, and coordinates global activities related to Pompe disease.

Additional Patient Groups Acid Maltase Deficiency Association (AMDA)

The Pompe’s Group of the Association for Glycogen Storage Disease

United Pompe Foundation

Genetic Alliance