Online Connections

Here you will find information on groups that have been created mainly on Facebook. Please note that these groups are not affliated with MDANZ.


There is a Facebook group for members to join for support with Ataxia. Kiwis with Ataxia is a closed Facebook group, to join you have to click "join group". Search Kiwis with Ataxia on Facebook or click here 

CMT disease New Zealand

This is a closed group for so to be added you will need to message the group. Search for CMT disease New Zealand on Facebook or click here

Kiwi Kids with DMD (Duchenne Muscular Dystrophy)

This is a Facebook support group for parents of Kiwi Kids with DMD. They describe themselves as 'a group where we can all chat and share our experiences and ideas together, and support each other, friends, families and our Kiwi Kids with DMD. Anybody is welcome to join.


There are several Myositis Facebook support groups available. Check out the Myositis Support's Facebook group page. There are also pages for Juvenile Dermatomyositis, Polymyositis, Inclusion Body Myositis, and general Myositis groups. Please refer to the Inflammatory Myopathy page for more details. 

Myotonic Dystrophy

This is a Facebook group created by MDANZ members to support people with Myotonic Dystrophy. If you are interested you can search Facebook for NZ Myotonic Dystrophy Support Group and ask to join, or click here

Myasthenia Gravis

There is a Facebook group created by MDANZ member Talitha Vial to support people with Myasthenia Gravis, or for the website click here. Contact Talitha 027 2203 138. 

Neurofibromatosis Type 1 Group

Supporting people with Neurofibromatosis and their families/whanau/caregivers - and any one else interested. Search Neurofibromatosis New Zealand Support on Facebook.

OPMD Oculopharyngeal muscular dystrophy

This page has been set up by someone in the US but is open to anyone around the world. Please search for OPMD Oculopharyngeal muscular dystrophy on Facebook.

Spinal muscular atrophy

This is a Facebook support group for people who have or know of people who have spinal muscular atrophy in New Zealand. A place to share information, ideas and offer support. Search SMA New Zealand on Facebook.

SMA Adult

This is Facebook group is hoping to address a lack of 'Adult' support for people with SMA. Everyone is welcome though discussion's should lean towards the issues people with SMA face later in life. You will need to join the group to see the posts. Search SMA Adult Support Group on Facebook.