Online Connections

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


Kiwis with Ataxia is a closed Facebook group that supports people living with Ataxia.

CMT disease New Zealand

CMT disease New Zealand is a closed group providing a safe place for people with Charcot-Marie tooth disease (CMT), and their family and friends to meet like-minded people.

Kiwi Kids with DMD (Duchenne Muscular Dystrophy)

Kiwi Kids with DMD 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 support groups available on Facebook - search Myositis Support. 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

The NZ Myotonic Dystrophy Support Group is a Facebook group created by MDANZ members to support people with Myotonic Dystrophy.

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. 


There are several Neurofibromatosis support groups on Facebook - search Neurofibromatosis.

OPMD Oculopharyngeal muscular dystrophy

The OPMD Oculopharyngeal muscular dystrophy page has been set up by someone in the US and is open to anyone around the world.

Spinal muscular atrophy (SMA)

The SMA New Zealand page is 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.

The SMA NZ page has been set up to educate, support, advocate and raise both awareness and support SMA community initiatives in the hope of providing as much assistance to the SMA community in New Zealand.

SMA Adult

The SMA Adult Support Group Facebook page is an international page that addresses 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.