Rare disease support group directory

NZORD has compiled a list of rare disease support groups, representing diseases with an incidence of 1 in 2000 or less. These groups are a useful first point of contact for support or information on a rare disease, and can provide ongoing assistance and community for those affected by rare diseases.

Can’t find your group?

We have also compiled a list of other New Zealand health and disability support and information groups and services for both rare and common disorders. These groups can provide information and assistance with conditions related to a rare disorder.

Most listings include only the national office. Local contacts are available through that source.

This page is copyright to NZORD.

Acoustic Neuroma Association of New Zealand
Postal address: PO Box 222, Taumaranui 3946
Phone: 07 896 7452
Email: info@acousticneuroma.org.nz
Website: www.acousticneuroma.org.nz
Acromegaly Society, The New Zealand
Postal address: PO Box 302, Morrinsville 3304
Phone: 021 293 5506
Email: info@acromegaly.org.nz
Website: www.acromegaly.org.nz
Albinism Trust
Postal address: 7 Earl St, Levin 5510
Phone: 06 368 8484
Email: albinism@inspire.net.nz
Website: www.albinism.org.nz/
ALD Foundation Trust - support for adrenoleukodystrophy and related X-linked disorders
Postal address: 75 Motutara Road, R.D.1, Muriwai
Phone: 09 411 9221
Email: ald.info@nzord.org.nz
Website: www.ald.org.nz
Alpha-1 New Zealand - support group for alpha-1-antitrypsin
Phone: 06 3289018 or 04 5287050
Email: alpha1.info@nzord.org.nz
Website: www.alpha1.org.nz
Angelman Network
Postal address: 18 Atamira Close, Churton Park, Wellington 6037
Phone: 021 1382878
Email: angelmannetwork@gmail.com
Website: angelman.org.nz
Arnold Chiari Malformation Support Group
Postal address: 3 Townend St, Waipara, North Canterbury 7447
Phone: 020 40013378
Email: acm.info@nzord.org.nz
Website: www.acmsupport.org.nz
Arthrogryposis Group of New Zealand (TAG-NZ)
Postal address: 57 Helmore St, Wanganui
Email: arthrogryposis.info@nzord.org.nz
Website: www.arthrogryposis.org.nz
Ataxia Telangiectasia Support Group
Postal address: 15 Clyde Street, Mataura 9712
Phone: 03 203 3252 021 211 7838
Email: AtaxiaTinfo@nzord.org.nz
Batten Disease Support Group C/- Lysosomal Diseases New Zealand
Postal address: 167 Hollister Lane, Ohauiti, Tauranga 3112
Phone: 07 544 8868
Email: lysosomal.info@nzord.org.nz
Website: www.ldnz.org.nz
Beckwith–Wiedemann Children's Assn of NZ (Inc)
Postal address: P.O. Box 43-014, Darfield 7541
Phone: 021 922213
Email: Carolyn@bwcanz.org
Website: www.bwcanz.org
Behcets Disease Support Group
Postal address: PO Box 117, Kaikohe
Email: behcets.info@nzord.org.nz
Website: www.behcets.org.nz
Bowel Group for Kids - support for children with Hirschprung's disease or imperforate anus
Postal address: 66 Alicia Road, Somerville, Manukau 2014
Phone: 0274 435 457
Email: nz@bgk.org.au
Website: www.bgk.org.au
Brown Vialetto Van Laere Support Group
Email: BVVL.info@nzord.org.nz
Cardiac Inherited Diseases Group
Postal address: Inherited Cardiac Disease Coordinator, Paediatric and Congenital Cardiac Services, Starship Hospital Park Road, Auckland
Phone: 09 3074949 09 3074949 ext 23634
Email: CIDGadmin@adhb.govt.nz
Website: www.cidg.org
CDKL5 Support Group
Postal address: 31 Benmore Avenue, Cloverlea, Palmerston North, 4412
Phone: 021 177 2993
Email: CDKL5info@nzord.org.nz
CHARGE Syndrome Association of Australasia
Postal address: 11B Evelyn Rd, Howick, Auckland 2014, New Zealand
Phone: 09 5370704
Email: Kelsey.Dalton@chargesyndrome.org.nz
Website: www.chargesyndrome.org.au
Chromosome18 Registry & Research Society (Australasia)
Postal address: Whare Ridge, 225 Whare Range Road, RD2 Gore 9772
Phone: 03 208 3161
Email: admin@chromosome18.org.au
Website: www.chromosome18.org
Congenital Adrenal Hyperplasia New Zealand
Postal address: PO Box 66, Waihi, Hauraki 3641, New Zealand
Email: info@cah.org.nz
Website: www.cah.org.nz
Congenital Cytomegalovirus Support Group
Postal address: C/- MacNeil, 56 Kelling Road, Upper Moutere, RD 2, Nelson 7175
Phone: 03 543 2621
Email: cc.info@nzord.org.nz
Congenital Dyserythropoietic Anemia Support Group
Postal address: 257 Dowse Drive, Maungaraki, Lower Hutt 5010
Phone: 021 048 2790
Email: cda.info@nzord.org.nz
Cornelia de Lange Syndrome Support Group
Postal address: 11 Winsomere Cres, Westmere, Auckland
Phone: 09 378 0720
Email: corneliadelange.info@nzord.org.nz
Website: www.cdlsaus.org
Cowden Syndrome & PTEN Mutations Support Group
Phone: 021 063 5599
Email: cowden.info@nzord.org.nz
Cri du Chat Support Group of New Zealand
Postal address: PO Box 637, Whangarei
Phone: 09 436 1113
Email: info@criduchat.org.nz
Website: www.criduchat.org.nz
DEBRA New Zealand - Research, support and nurse specialist services for epidermolysis bullosa (EB), the group of genetic disorders that cause blistering and shearing of the skin
Postal address: P.O. Box 7316, Newtown, Wellington 6242
Phone: 04 389 7316
Email: debra@debra.org.nz
Website: www.debra.org.nz
Doors Syndrome Support Group
Postal address: 224 New Windsor Rd, New Windsor, Auckland 0600
Phone: 09 626 4115
Email: doors.info@nzord.org.nz
Dyskeratosis Congenita Outreach Pacific
Email: connect@dcopacific.org
Website: dcopacific.org
Ectodermal Dysplasia Support Group
Postal address: Unit 1, 7 Mahoe St, Strandon, New Plymouth
Phone: 021 190 1158
Email: ectodermaldysplasia.info@nzord.org.nz
Ehlers–Danlos Advocacy Organisation
Email: info@EDAO.org.nz
Fabry Disease Support Group - c/- Lysosomal Diseases New Zealand
Postal address: 16 Woodleigh Place, Ohauiti, Tauranga
Phone: 07 544 8868
Email: lysosomal.info@nzord.org.nz
Website: www.ldnz.org.nz
Families of Spinal Muscular Atrophy NZ - FSMA NZ
Postal address: PO Box 4152, Christchurch
Phone: 021 609 870
Email: fsma.info@nzord.org.nz
FHL Support Group - support for familial haemophagocytic lymphohistiocytosis
Postal address: 56 Titi Road, Mauku RD 3, Pukekohe 2678
Phone: 09 2364233
Email: fhl.info@nzord.org.nz
Foetal Anti-Convulsant Syndrome NZ
Postal address: P O Box 82-175,Highland Park,Auckland 2010
Phone: 0211894483
Email: denise@facsnz.com
Website: www.facsnz.com
Foundation for Nager and Miller Syndromes
Postal address: 11B Acacia Place, Bell Block, New Plymouth
Phone: 06 755 1749
Email: nagermiller.info@nzord.org.nz
Website: www.nzord.org.nz/nager_and_miller_syndromes
Fragile X New Zealand Trust
Postal address: 196 Taita Drive, Avalon 5010, Lower Hutt
Phone: 021 044 6299
Freephone: 0508 938 0552
Email: info@fragilex.org.nz
Website: www.fragilex.org.nz
Gaucher Association of New Zealand – c/- Lysosomal Diseases New Zealand
Postal address: 167 Hollister Lane, Ohauiti, Tauranga 3112
Phone: 07 544 8868
Email: gaucher.info@nzord.org.nz
Website: www.ldnz.org.nz
Granulosa Cell Tumour Foundation New Zealand
Postal address: 91A Cranford Street, St. Albans, Christchurch, New Zealand 8014
Email: admin@gctf.org.nz
Website: www.gctf.org.nz
Guillain Barre Syndrome Support Group
Postal address: 30 Higgs Road, Mapua 7005, Nelson
Phone: 03 5403217, 027 6871953
Email: guillainbarre.info@nzord.org.nz
Website: www.gbsnz.org.nz
HAE Australasia Hereditary Angioedema Support Group
Phone: 09 473 8054
Email: hae.info@nzord.org.nz
Website: www.haeaustralasia.org.au
Haemochromatosis Support - C/- Leukaemia & Blood Cancer New Zealand (LBC)
Postal address: PO Box 99-182, Newmarket, Auckland
Freephone: 0800 15 10 15
Email: info@leukaemia.org.nz
Website: www.leukaemia.org.nz
Haemophilia Foundation of New Zealand
Postal address: PO Box 7647, Sydenham, Christchurch, 8240
Phone: 03 371 7477
Email: info@haemophilia.org.nz
Website: www.haemophilia.org.nz
Huntington's Disease Association (Auckland) - has contacts for other regions
Postal address: PO Box 16 238, Sandringham, Auckland 1351
Phone: 09 815 9703
Freephone: 0800 432 825
Email: huntingtonsakld@xtra.co.nz
Website: www.huntingtons.org.nz
ISCT Support Group - support for intramedullary spinal cord tumour
Postal address: 27 Beaches St, Avenal, Invercargill 9810
Phone: 0279038027
Email: ISCT.info@nzord.org.nz
Website: https://www.facebook.com/Intramedullary-Spinal-Cord-Tumor-support-group-NZ-1578861745730842
JDMS Friends - support for juvenile dermatomyositis
Email: dermatomyositis.info@nzord.org.nz
Kabuki Syndrome Support Group
Postal address: 315 Seaview Road, Stoke, Nelson
Phone: 03 547 2310
Email: kabuki.info@nzord.org.nz
Klippel Trenaunay Support Group
Postal address: 599 Curraghs Road, West Melton, RD6, Christchurch
Phone: 03 344 1090
Email: KT.info@nzord.org.nz
LAM Charitable Trust - Support group for Lymphangeoleiomyomatosis, commonly known as LAM
Postal address: 8 Paget St, Freemans Bay, Auckland
Phone: 09 376 4936
Email: director@lam.org.nz
Website: www.lam.org.nz
Leukaemia & Blood Cancer new zealand - LBC (Myelodysplastic syndrome)
Postal address: c/- Leukaemia and Blood Foundation, PO Box 99 182, Newmarket, Auckland
Phone: 09 638 3556
Freephone: 0800 15 10 15
Email: supportservices@leukaemia.org.nz
Website: www.leukaemia.org.nz
Li Fraumeni Syndrome Association - New Zealand chapter
Postal address: 83 Sedcole St, Pahiatua 4910
Phone: 027 4171449
Email: sarthur@lfsassociation.org
Website: lfsassociation.org
Lysosomal Diseases New Zealand
Postal address: 167 Hollister Lane, Ohauiti, Tauranga 3112
Phone: 07 544 8868
Email: lysosomal.info@nzord.org.nz
Website: www.ldnz.org.nz
MAGIC Foundation New Zealand - support for children with growth issues and their families
Postal address: 75 Beauchamp St, Karori, Wellington
Phone: 04 476 9896
Email: magic.info@nzord.org.nz
Mal de Debarquement Syndrome Support Group
Phone: 0276682110
Email: kashider@outlook.com
Mastocytosis Network of New Zealand - support for Mastocytosis and disorders of mast-cell activation
Website: www.mastokids.org
Moebius and Facial Paralysis Support Group of Australasia
Postal address: 1006A Maraekakaho Rd, Hastings
Phone: 027 817 1767
Email: moebius.info@nzord.org.nz
Motor Neurone Disease Association
Postal address: PO Box 24 036, Royal Oak, Auckland 1345
Phone: 09 624 2148
Email: admin@mnda.org.nz
Website: www.mnda.org.nz
Multiple Sclerosis Society of New Zealand
Postal address: PO Box 32124, Linwood, Christchurch 8147
Phone: 04 499 4677
Freephone: 0800 675 463
Email: info@msnz.org.nz
Website: www.msnz.org.nz
Muscular Dystrophy Association of New Zealand
Postal address: PO Box 12 063, Penrose, Auckland 1642
Freephone: 0800 800 337
Email: info@mda.org.nz
Website: www.mda.org.nz
Myasthenic Gravis Support Group
Postal address: 422 Pahiatua-Pongaroa Road, Pahiatua 4982
Phone: 06 376 7560
Email: mg.info@nzord.org.nz
Website: www.mda.org.nz
Myeloma Matters
Postal address: 17 Richard St, Titahi Bay
Neurofibromatosis Association of New Zealand
Postal address: 23 Waimahanga Rd, Onerahi, Whangarei 0101
Phone: 09 436 5211
Email: neurofibromatosis.info@nzord.org.nz
Website: www.nfnz.org.nz
New Zealand Acromegaly Society, The

See Acromegaly Society, The New Zealand
New Zealand Dystonia Patient Network
Postal address: P O Box 34 259, Birkenhead, Auckland 0746
Email: info@dystonia.org.nz
Website: www.dystonia.org.nz
New Zealand Pompe Network

See Pompe Network, New Zealand
New Zealand Pulmonary Arterial Hypertension Group

See Pulmonary Arterial Hypertension Group, New Zealand
Occulodentodigital Dysplasia Support Group
Postal address: 115 Akatarawa Rd, RD2, Upper Hutt 5372
Phone: 027 508 1868
Email: od.info@nzord.org.nz
Oncogenic Osteomalacia Support Group
Postal address: 61 Robert Skelton Place, Auckland
Phone: 02102286387
Email: oo.info@nzord.org.nz
Orthostatic Tremor Support Group
Postal address: 28 Miromiro Drive, Seaview, Kaikoura 7300
Phone: 03 3197998
Email: OT.info@nzord.org.nz
Oxalosis & Hyperoxaluria Foundation - C/- Kidney Kids of New Zealand
Postal address: PO Box 13 732, Onehunga, Auckland 1643
Freephone: 0800 215 437
Email: admin@kidneykids.org.nz
Website: www.kidneykids.org.nz, www.ohf.org
Pachyonychia Congenita Support Group
Email: pc.info@nzord.org.nz
Perry Syndrome Support Group
Postal address: 149 Royal Park Drive, Parklands, Christchurch 8083
Phone: 03 383 0427
Email: perry.info@nzord.org.nz
Perthes Support Group
Phone: 027 474 2128
Email: perthesnz@yahoo.com.au
Website: www.kiwigypsynz.wix.com/perthes
Phace Syndrome Support Group
Email: phace.info@nzord.org.nz
PKU New Zealand Charitable Trust
Postal address: c/- PO Box 210, Nelson
Email: pkunztrust@gmail.com, https://www.facebook.com/PKU-NZ-151040881636935/
PNH Support Association of New Zealand - support for paroxysmal nocturnal haemoglobinuria
Postal address: 4 Triton Ave., Mt Roskill, Auckland 1025
Phone: 021 115 3790
Email: admin@pnhsanz.org.nz
Website: www.pnhsanz.org.nz
Polymyositis Support Group
Postal address: Witherlea, Blenheim
Email: polymyositis.info@nzord.org.nz
Pompe Network, New Zealand
Email: nz.pompe@gmail.com
Website: nzpompenetwork.weebly.com
Porphyria Support Group
Postal address: 10 Muir Ave, Halswell, Christchurch
Phone: 03 322 8877
Email: porphyria.info@nzord.org.nz
Website: www.porphyria.org.nz
Prader-Willi Syndrome Association of New Zealand
Postal address: PO Box 258, Silverdale, Auckland 0944
Phone: 09 427 5404
Freephone: 0800 4 PWS HELP ( 0800 4 797 4357)
Email: ceo@pws.org.nz
Website: www.pws.org.nz
Pseudotumor Cerebri/Intracranial Hypertension Support Group
Postal address: 54 Beach Valley Rd, Piha, Waitakere
Phone: 021 969 924
Email: pcih.info@nzord.org.nz
PSP Support Network of New Zealand - support for Progressive Supranuclear Palsy
Postal address: 25 Gilligan Close, Wanganui
Phone: 06 345 2211
Email: psp.info@nzord.org.nz
Pulmonary Arterial Hypertension Group, New Zealand - NZPAH
Phone: 09 236 8366 / 027 2368366
Email: info@nzpah.org.nz
Website: www.nzpah.org.nz
Pulmonary Fibrosis Support Group
Postal address: 8 Domigan Street, Brockville, Dunedin 9011
Phone: 03 476 2569
Email: pf.info@nzord.org.nz
Website: www.pulmonaryfibrosis.org.nz
PXE International - support for pseudoxanthoma elasticum
Postal address: P O Box 911 022, Victoria Street West, Auckland 1142
Phone: 027 457 8123
Email: info@pxe.org
Website: www.pxe.org
Rare Fat Disorders Support Group (Pacific Australia) - Support for those living with Dercum's Disease, Lipedema, Madelung's Disease and FML.
Email: rfd.info@nzord.org.nz
Website: www.facebook.com/groups/254369064687807/
Rett New Zealand - support for Rett syndrome
Postal address: PO Box 28 049, Wellington
Phone: 04 475 9265
Email: rett.info@nzord.org.nz
Website: www.rettsyndrome.org.nz
SOFT - support group for Trisomy 13/18
Postal address: 123 Lethbridge Street, Feilding
Email: Perry.newburn@xtra.co.nz
Spina Bifida Association of New Zealand
Postal address: 181 Beer Rd, RD1, Cambridge 3493
Phone: 07 827 4239
Email: spinabifidanz@zoho.com
Website: www.spinabifida.org.nz
Online Forum: www.facebook.com/groups/SpinabifidaNZ
Stevens–Johnson Syndrome
Phone: 09 4026969/0211948130
Email: karl.niki70@gmail.com
Superficial Siderosis Support Group
Postal address: C/- Mr D Hill, 9 Ascot Road, Weston, Oamaru 9401
Phone: 03 434 5644
Email: sssurvivors@gmail.com
Website: www.superficialsiderosis.org.nz, https://www.facebook.com/groups/358154280899208/
SWAN NZ - Syndromes Without a Name
Email: swannz@nzord.org.nz
Website: www.swannz.org.nz
Sweets Syndrome
Postal address: 1/207 Southampton Street West, Hastings 4122
Phone: 06 878 9414
Email: sweetsyndrome.info@nzord.org.nz
Website: helpforsweetssyndromeuk.wordpress.com
Tetrasomy 18p
Phone: 022 679 1198
Email: tetrasomy-18p.info@nzord.org.nz
The New Zealand Acromegaly Society

See Acromegaly Society, The New Zealand
The Wolf Pack Foundation - raising awareness and funds for Wolfram syndrome
Website: www.thewolfpackfoundation.com.au
Transverse Myelitis Support Group
Postal address: PO Box 95 087, Swanson, Auckland
Phone: 09 810 9807
Email: transversemyelitis.info@nzord.org.nz
Website: www.myelitis.org
Trigeminal Neuralgia Support New Zealand
Email: TN.info@nzord.org.nz
Tuberous Sclerosis Complex New Zealand (TSCNZ)
Phone: 0211547017
Email: info@tsc.org.nz
Website: www.tsc.org.nz
Turner Syndrome Support Group NZ Inc.
Postal address: 73, Sinclair Terrace, Te Awa Mutu 3800
Phone: 0274840944
Email: info@turnersyndrome.co.nz
Website: www.turnersyndrome.co.nz
Online Forum: www.facebook.com/pages/TSSG-NZ/212846682016
Vein of Galen Malformation Support Group
Email: vgm.info@nzord.org.nz
VHL Family Alliance New Zealand - support for Von Hippel–Lindau Disease
Phone: 021 527488
Email: newzealand@vhl.org
Website: www.vhl.org.nz
Wegeners Granulomatosis Support Group
Postal address: 2a Fairclough Road, Beach Haven, North Shore, Auckland
Phone: 027 277 8775
Email: wg.info@nzord.org.nz
Williams Syndrome Association
Postal address: 5248B Bush Road, Ngatea
Phone: 07 8677710 or 027 6372524
Email: wsanz.info@nzord.org.nz
Website: www.williams-syndrome.org.nz