Nationwide Support Groups

This is a list of known support groups for people living with or affected by a neuromuscular condition, please note these groups are not necessarily affiliated with the MDA or it's branches. If you know of a group you would like added to this page please contact the MDA or email info@mda.org.nz. If your condition is not listed you can join a non condition specific group or start your own!

Interested in starting a support group? Click here.

Canterbury Region Support Groups

  • Christchurch: Open invite to MDA members to join the CMT support group who meet in the Northland Mall once a month. Contact Paul Arthur on 03 354 3943.

  • Myotonic Dystrophy: Contact Paul Graham the Canterbury MDA Fieldworker if you are interested in meeting once a month. Transport may be able to be provided if this is a barrier to attending 0800 463 222 or 021 126 1209. 

  • Timaru : Join the South Island group that meet up 3 or 4 times a year for something to eat and a chat. Contact Leanne on 03 684 8345 to be added to the invite.

Charcot-Marie-Tooth Support Groups

  • Auckland contact Christine on 09 817 3165

  • Thames/Coromandel contact Marianne on 07 868 3858

  • Canterbury (other conditions are welcome too!) contact Paul Arthur on 03 354 3943

Guilian Barre Syndrome Support Group

Inclusion Body Myositis

  • Don Ross is alway happy to hear from people wanting to be in touch with others. You can reach him at teddy@wise.net.nz or 06 377 5339 

Kiwi Kids with DMD 

  • 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'. Click here to be taken to the Facebook page.

Livewire

  • This is a free, safe and fun online community for young people aged over 10 and under 21 years living with a serious illness, chronic health condition or a disability. To join go to www.livewire.org.nz. To speak to someone please call the Livewire support team on 0800 000 680 (11am - 7pm) or email member.services@livewire.org.nz : check out this video to get an idea of what this community is all about https://vimeo.com/150957852

Myositis Support Groups

  • There are several myositis facebook support groups available. There are pages for Juvenile Dermatomyositis, Polymyositis, Inclusion Body Myositis, Dermatomyositis, and general Myositis groups. Click here to be taken to the Inflammatory Myopathy page for more details. 

Myasthenia Gravis Facebook Support Group

  • This is a Facebook group created by MDA 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 is Talitha Vandenberg 0272 203 138.  Facebook = My Myasthenia Gravis Support Group.  Website = myastheniagravisnz.wordpresscom.

Neurofibromatosis type 1 Facebook Support Group

  • Supporting people with Neurofibromatosis and their families/whanau.caregivers - and any one else interested. Search Neurofibromatosis New Zealand Support  on Facebook or click  here to be taken to the Facebook page. 

 Northern  Region Support Groups

  • Last Wednesday of the month on Auckland's North Shore: Contact Serena either by email to serenaleong@gmail.com or text 021 174 4885

  • Duchenne Under 13 Support Group:  Debbie and Michael Schneider have started this Support Group for parents/caregivers/whanau who have children that have recently been diagnosed with DMD,or for those with children under 13 years of age in the greater Auckland area.

    This group is run by parents for parents/caregivers/whanau of children with DMD.  Everyone is welcome to bring their questions and suggestions; to share their knowledge and frustrations, and to support one other on their  journey with DMD, without becoming too overwhelmed and looking too far ahead into the future.

    We meet at the Muscular Dystrophy Offices, 419 Church Street, Penrose, Auckland, on the first Monday of the Month at 7.30 pm.  Please call us on either:  Debbie:  022 044 0221 or Michael:  021 851 747.

  • New Coffee Group at Wilson Home Trust Cottage in Takapuna for parents of special needs children.  Third Friday of each month starting Friday 15th August.  For more info contact Anne 0212179792 or anne@wilsonhometrust.org.nz

  • Any Wednesday there is an open invitation to MDA members and friends to the Rawene Centre Community Lunch on Auckland's North Shore. This is $4 for a main and dessert. The location is accessible and the food is wholesome and freshly cooked by MDA member Alex Malcom. Just mention you are member of the MDA. 33-35 Rawene Street, Birkenhead (map) menu available on Facebook 

  • Sensational Siblings - Sensational siblings meets on 1st Friday of every Month in Takapuna and the 4th Wednesday of every month in Orewa. Sensational siblings get to hang out, take part in lots of activities, have fun and make friends.  Please contact Kerry for more information  (09) 4887490 or kerry@phab.org.nz

Mercury Bay Health Support Group 

  • This support group is based in Whitianga. Please contact Mary-Anne Lister for more details. Phone 07 8695952 

Pompe Support Group

Southern Region Support Group

  • Join the Dunedin Muscular Dystrophy Support Group's FaceBook page here or email Lara at willison82@hotmail.com to be added to the email list for get togethers. All welcome!

Spinal Muscular Atrophy Facebook Support Group

  • 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. You will need to join the group to see the posts. Search SMA New Zealand on Facebook or click here to be taken to the Facebook page. 

SMA Adult Support Facebook Group

  • This 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 or click here to be taken to the Facebook page.

Wellington Region Support Group

Looking for people to support the following groups:

  • Partners of people with a neuromuscular condition

  • Mum's Groups

Interested in starting a support group? Click here.