Join the Alpha-Mannosidosis Community

Alpha-Mannosidosis Community

You don’t need to face the challenges of Alpha-Mannosidosis alone. There’s a supportive community out there that’s eager to provide information, compassion, and advice. When you’re feeling low (and there will be times), a host of organisations and support groups is just a few clicks away to provide support for your child and you. Patient organisations and support groups often provide both information and support from others who have been through similar diagnoses as a family.

Links are provided below to sites that you may wish to visit to help you to get further support from others who have been through similar experiences.

Patient organizations

Patient organizations map
ISMRD

ISMRD is the international support group for Alpha-Mannosidosis

ERN

Other MPS groups around the world will also offer support. MetabERN is a network of healthcare providers and patient groups across Europe, providing support for people with inherited metabolic disorders such as Alpha-Mannosidosis.

LDNZ

Lysosomal Diseases New Zealand is the support group for families in New Zealand.