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.

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.

Myositis

There are several myositis Facebook support groups available. There are pages for Juvenile Dermatomyositis, Polymyositis, Inclusion Body Myositis, and general Myositis groups. Please refer to the Inflammatory Myopathy page for more details.

Myasthenia Gravis

This is a Facebook group created by MDANZ member Talitha to support people with Myasthenia Gravis. If you are interested you can search Facebook for Myasthenia Gravis Support group, New Zealand and ask to join. Contact Talitha Vandenberg 027 2203 138. Facebook search My Myastenia Gravis Support Group or for the website click here.

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.