Community Connections

Community Connections & Peer Support Directory

No one should feel isolated on their neuromuscular journey.

Welcome to our Community Hub. Whether you’re looking for a local coffee group near you, a safe, private Facebook group, or a 1-on-1 chat with someone who truly understands what you’re going through, you’ll find your network here.

How would you like to connect? Jump to:

1-on-1 Peer Connect
Regional Groups
Online Forums

1-on-1 personal contacts & peer matching

Sometimes, talking one-on-one with someone who has walked in your shoes is the most comforting support available. Our Peer Connect network matches members, parents, and whānau carers with experienced peer contacts.

Newly diagnosed support

Talk with a member living with the same condition who can share practical tips and reassurance.

Parent & whānau carer connect

Pair up with another carer who understands the daily balance of caregiving, school, and funding.

Youth & young adult buddies

Connect with peers navigating tertiary study, employment, independent living, and social life.

Request a 1-on-1 Peer Match

Regional & in-person support groups

Connect locally with members and whānau in your district for informal catch-ups, coffee mornings, family picnics, and guest speaker events.

    • Auckland Monthly Coffee Mornings: Auckland groups on hold until further notice.

    • Tauranga Coffee Groups: Join us for the next monthly Tauranga Coffee Group on Saturday 29th August from 11.00am.

      Venue - Bosco Cafe at the Lakes (1 Caslani Lane, Pyes Pa, Tauranga)

    • Hamilton Coffee Group: Join us for the next monthly Hamilton Coffee Group on Saturday 19th September from 10.30am.

      Venue - Cafe Botannix Palmers, Rototuna.

    • Wellington & Hutt Valley Member Group: Regular local meetups and accessible outings.

    • Hawke’s Bay & Manawatū Carer Catch-ups: Informal peer support groups for parents and primary carers.

    Want to find out when the next meeting is near you? Connect with your local Fieldworker or check our Events Calendar.

    • Papanui Coffee Group: Meets on the first Saturday of the month at Columbus Café in Mitre 10 Mega, Papanui at 10am. Please contact Vivienne Fitzgerald on 022 304 6840 or email: southern@mda.org.nz

    • Riccarton Coffee Group: Meets at Moko Café inside the Bush Inn Mall on Riccarton Road on the second Saturday of the month at 10am. Please contact Vivienne Fitzgerald on 022 304 6840 or email: southern@mda.org.nz

    • Rangiora Coffee Group: Meets at the Rangiora RSA on Victoria Street, Rangiora on the last Wednesday of the month at 2pm. Please contact Vivienne Fitzgerald 022 304 6840 or email: southern@mda.org.nz

    • Nelson Coffee Group: Meets every 6 weeks at Pic’s Peanut Butter Factory Café. For more information and dates, please contact Jane Hazlett on 027 205 5586 or email jane.hazlett@mda.org.nz

    • Blenheim Coffee Group: Meets at Revive Café in Springlands. For more information and dates please contact Jane Hazlett on 027 205 5586 or email: jane.hazlett@mda.org.nz

    • West Coast Coffee Group: or more information and meeting dates for the West Coast Coffee Group, please contact Jane Hazlett on 027 205 5586 or email jane.hazlett@mda.org.nz.

    • Dunedin Coffee Group: Meets on the last Friday of every month at Nicholls Garden Café in South Dunedin at 2pm. Please contact Vivienne Fitzgerald on 022 304 6840 or email: southern@mda.org.nz

Online & virtual communities

If you live in a rural area, have mobility challenges, or simply prefer connecting from the comfort of home, our digital groups are active 24/7.

  • Ataxia

    • Kiwis with Ataxia: A closed Facebook support group specifically for individuals and families in New Zealand living with Ataxia to share experiences and practical advice.

    Charcot-Marie-Tooth Disease (CMT)

    • CMT Disease New Zealand: A closed Facebook community providing a safe, supportive space for Kiwis living with CMT, as well as their family and friends, to meet like-minded people.

    Duchenne Muscular Dystrophy (DMD)

    • Kiwi Kids with DMD: A dedicated Facebook support group for parents, family, and friends of Kiwi children living with Duchenne Muscular Dystrophy. A warm community where members share ideas, milestones, and encouragement.

    Limb Girdle

    • Limb Girdle NZ Facebook group: A New Zealand support group for people living with Limb Girdle Muscular Dystrophy and their families. A place to share information and ideas on managing these conditions.

    Myositis & Inflammatory Myopathies

    Myasthenia Gravis (MG)

    • Myasthenia Gravis NZ Support Group: A Facebook support group established by MDANZ member Talitha Vial for individuals and families affected by Myasthenia Gravis.

      (Direct Contact: Talitha Vial – 027 220 3138)

    Myotonic Dystrophy

    • NZ Myotonic Dystrophy Support Group: A Facebook community created by MDANZ members to offer peer support, news, and shared experiences for people living with Myotonic Dystrophy.

    Neurofibromatosis

    • Neurofibromatosis in New Zealand: This group is a support group for people in New Zealand who have any form of Neurofibromatosis

    • Neurofibromatosis Support Groups: There are several dedicated peer-led support pages and discussion groups active on Facebook. Search Neurofibromatosis Support on Facebook.

    Oculopharyngeal Muscular Dystrophy (OPMD)

    Spinal Muscular Atrophy (SMA)

    • SMA New Zealand: A national Facebook page dedicated to supporting, educating, advocating for, and raising awareness within the SMA community across New Zealand.

    • SMA Adult Support Group: An international Facebook group focusing on the unique opportunities, adult health considerations, and independence topics faced by adults over 50 living with SMA.

    • Livewire

      Livewire is a free, safe and fun online community for young people aged between 10 and 21 years living with a serious illness, chronic health condition or a disability. To speak to someone, please call the Livewire support team on 0800 000 680 (11am – 7pm) or send them an email. Check out this video to get an idea of what this community is all about.

    • National Carer Evening Chats

    • Condition-Specific Virtual Roundtables (e.g., CMT, FSHD, SMA)

    • Parenting with a Condition Group

    • RareConnect Communities

    • Global Condition Associations

  • IBM support group meetings are held online where attendees use the space as a forum to share and socialise. Guest speakers attend from time to time. Anyone with IBM or anyone who has family/friends with IBM is welcome to attend. Notes from previous meetings are sent out to members who are unable to attend. For more information on this group, please email info@mda.org.nz.

Safe space guidelines & starting your own group

Our Community Promise

All MDANZ groups, whether in-person, online, or 1-on-1, are safe, confidential, and non-judgmental spaces. Respect for privacy, diverse backgrounds, and personal medical choices is required across all platforms.

Want to start a local coffee group or online interest club?

If there isn’t an active group in your local town or for your specific condition, your regional Fieldworker can help you set one up! We provide support with venue booking, promoting the group to local members, and covering light refreshment costs.