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
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
Postal address: 50A Chatsworth Rd, Silverstream, Upper Hutt
Phone: 04 528 7050
Email: alpha1.info@nzord.org.nz
Website: www.alpha1.org.nz
Alstrom Syndrome International - New Zealand Chapter
Postal address: 6A Parvin Place, Pukekohe, Auckland 2120
Phone: 09 238 9109
Email: alstrom.info@nzord.org.nz
Website: www.alstrom.org
Angelman Network
Postal address: 18 Atamira Close, Churton Park, Wellington 6037
Phone: 09 555 3882 or 021 1382878
Email: angelmannetwork@gmail.com
Website: www.angelmannetwork.com
Arnold Chiari Malformation Support Group
Postal address: 3 Townend St, Waipara, North Canterbury 7447
Phone: 027 713 3221
Email: acm.info@nzord.org.nz
Website: www.acmsupport.org.nz
Arthrogryposis Group of New Zealand (TAG-NZ)
Postal address: 57 Helmore St, Wanganui
Phone: 06 343 3394
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: bwcanz@bwcanz.org
Website: www.bwcanz.org
Behcets Disease Support Group
Postal address: PO Box 117, Kaikohe
Phone: 09 401 0429
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
Website: www.bvvl.co.uk
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: 06 353 8033 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: chromosome18.info@nzord.org.nz
Website: www.chromosome18.org
Congenital Adrenal Hyperplasia New Zealand
Postal address: PO Box 66, Waihi, Hauraki 3641, New Zealand
Freephone: 0800 224 698 (0800 CAH NZT)
Email: info.CAHNZ@gmail.com
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
Postal address: 146a Brookside Tce, Bryndwr, Christchurch
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: criduchat.info@nzord.org.nz
Website: www.criduchat.org.nz
DEBRA New Zealand - Support and research for Dystrophic Epidermolysis Bullosa
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
Ectodermal Dysplasia Support Group
Postal address: Unit 1, 7 Mahoe St, Strandon, New Plymouth
Phone: 021 190 1158
Email: ectodermaldysplasia.info@nzord.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
FHL Support Group - support for Familial Haemophagocytic Lymphohistiocytosis
Postal address: 56 Titi Road, Mauku RD 3, Pukekohe 2678
Phone: 09 236 4182
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: 04 938 0552
Freephone: 0508 938 0552
Email: info@fragilex.org.nz
Website: www.fragilex.org.nz
FSMA NZ - Families of Spinal Muscular Atrophy NZ
Postal address: PO Box 4152, Christchurch
Phone: 021 609 870
Email: fsma.info@nzord.org.nz
Website: www.smanz.org
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: 27 Grenville St, New Plymouth 4310
Phone: 06 751 1014
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: huntingtons.info@nzord.org.nz
Website: www.huntingtons.org.nz
ISCT Support Group - support for intramedullary spinal cord tumour
Postal address: 783C Queens Drive, Waikiwi, Invercargill 9810, New Zealand
Phone: 0279038027
Email: ISCT.info@nzord.org.nz
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
Leukodystrophy Support Group
Postal address: 18 Thames St, Mosgiel
Phone: 03 489 1209
Email: leukodystrophy.info@nzord.org.nz
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 Support Group
Postal address: 1/472 Tremaine Avenue, Palmerston North 4410
Phone: 06 356 1370
Email: mdd.info@nzord.org.nz
Mastocytosis Network of New Zealand - support for Mastocytosis and disorders of mast-cell activation
Website: www.mastokids.org
Online Forum: www.facebook.com/groups/754339814615863/
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
Phone: 09 815 0247
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
Myelodysplastic Syndrome Support Group
Postal address: c/- Leukaemia and Blood Foundation, PO Box 99 182, Newmarket, Auckland
Phone: 09 638 3556
Freephone: 0800 15 10 15
Email: lbf@leukaemia.org.nz
Website: www.leukaemia.org.nz
Myeloma Matters
Postal address: 17 Richard St, Titahi Bay
Phone: 04 236 7564
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
Neurosarcoidosis Support Group
Postal address: Private Box 229, Cambridge, 3432
Phone: 0272560595
Email: neurosarcoidosis.info@nzord.org.nz
New Zealand Pulmonary Arterial Hypertension Group (NZPAH)
Phone: 09 236 8366
Email: info@nzpah.org.nz
Website: www.nzpah.org.nz
Occulodentodigital Dysplasia Support Group
Postal address: 5 Taylor Street, Brighton, Dunedin
Phone: 03 481 1578
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: 160B Scott Street, Redwoodtown, Blenheim 7201
Phone: 03 5789821
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
Phone: 07 542 0740
Email: phace.info@nzord.org.nz
PKU New Zealand Charitable Trust
Postal address: c/- PO Box 210, Nelson
Phone: 09 835 4796
Email: pkunztrust@gmail.com
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
Phone: 022 0133645
Email: polymyositis.info@nzord.org.nz
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 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: pxe.info@nzord.org.nz
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
Sarcoidosis Support Group
Postal address: Private Box 229, Cambridge, 3432
Phone: 0272560595
Email: sarcoidosis.info@nzord.org.nz
SOFT - support group for Trisomy 13/18
Postal address: 123 Lethbridge Street, Feilding
Phone: 06 323 2730
Email: soft.info@nzord.org.nz
Spasmodic Dysphonia Support Group
Postal address: PO Box 305 375, Triton Plaza, North Shore 0757
Email: info@dystonia.org.nz
Website: www.dystonia.org.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
Superficial Siderosis Support Group
Postal address: C/- Mr D Hill, 9 Ascot Road, Weston, Oamaru 9401
Phone: 03 434 5644
Email: sssurvivors@clear.net.nz
Website: superficialsiderosis.wordpress.com
Sweets Syndrome
Postal address: 3/803 Heretaunga Street East, Park Value, Hastings 4122
Phone: 06 878 9414
Email: sweetsyndrome.info@nzord.org.nz
Website: helpforsweetssyndromeuk.wordpress.com
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: P O Box 4285, Hamilton East 3247
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
Website: www.veinofgalen.org.nz
VHL Family Alliance New Zealand - support for Von Hippel–Lindau Disease
Postal address: 17 Kate Sheppard Ave, Torbay, Auckland
Phone: 09 473 0900
Email: vhl.info@nzord.org.nz
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
Website: www.wegeners.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
XLH Network - Support for X-linked Hypophosphatemia
Postal address: Flat 1/77 Fairfield Avenue, Addington, Christchurch
Phone: 03 980 0535
Email: xlh.info@nzord.org.nz
Website: www.XLHNetwork.org
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