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: Relaxed monthly catch-ups in accessible venues across North, South, and Central Auckland.

    • Waikato & Bay of Plenty Whānau Meets: Bi-monthly family gatherings and carer morning teas.

    • Young Adult Social Group: Social outings and dinners for members aged 18–35.

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

    • The Wilson Home Trust: Supports and enhances the lives of physically disabled children, young adults up to the age of 22 and their whanau in the top half of the North Island. The trust offers the following services:

      • Grant Funding, including equipment/activities, holidays, wellbeing and emergency assistance

      • Information and Support

      • Hydrotherapy

      • Parent/Carer Activities

      • Equipment demonstrations.

      • For more information go to www.wilsonhometrust.org.nz, phone 0800 948 787 or 09 488 0126, or email info@wilsonhometrust.org.nz.

    • IBM Support Group: The IBM Gathering happens approximately three times per year and is primarily for people in Auckland with IBM. These gatherings are held at Rehab Plus in Point Chevalier from noon-2pm. It is a positive support group where attendees use the space as a forum to share and socialise, often over a shared lunch. 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 support@mdn.org.nz.

    • Hamilton Coffee Group: Muscular Dystrophy Northern’s Hamilton coffee group meets at Palmers Garden Centre Café, Rototuna on the second Wednesday of the month at 10.30am. For more information email support@mdn.org.nz.

    • 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 – Christchurch: 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 – Christchurch: Meets at Moko Café inside the Bush Inn Mall on Riccarton Road on the second Saturday of the month at 10am. Please contact Kim Russell on 021 102 1448 or email: garyandkim716@gmail.com

    • Rangiora Coffee Group: Meets at the Rangiora RSA on Victoria Street, Rangiora on the last Wednesday of the month at 2pm. Please contact Bruce Dodd on 027 4499 794 or email: bruce.dodd3@gmail.com

    • Timaru/South Canterbury Coffee Group: For information about the Timaru/South Canterbury Coffee Group, please contact Vivienne Fitzgerald on 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 Kevin Page on 03 544 7586 or 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: For more information and meeting dates for the West Coast Coffee Group, please contact Chanel Sluys on 021 042 7771 or email: cjsluys@live.com

    All other South Island events, 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.

  • Moderated, Member-Only Spaces

    • MDANZ Members & Whānau Community

    • Parents & Whānau Carers Group

    • MDANZ Youth Network (Ages 16–30)

  • 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.

    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

    • TREAT-NMD Global Patient Groups

    • RareConnect Communities

    • Global Condition Associations

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.