Rare disease support group directory

Number of live entries: 216

Acoustic Neuroma Association of New Zealand
Phone: 07 896 7452
Email: info@acousticneuroma.org.nz
Website: www.acousticneuroma.org.nz
Acromegaly Society, The New Zealand
Phone: 021 293 5506
Email: info@acromegaly.org.nz
Website: www.acromegaly.org.nz
Age Concern New Zealand
Phone: 04 801 9338
Email: national.office@ageconcern.org.nz
Website: www.ageconcern.org.nz
Albinism Trust
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
Phone: 09 411 9221
Email: ald.info@nzord.org.nz
Website: www.ald.org.nz
Allergy New Zealand
Phone: 09 623 3912
Freephone: 0800 340 800
Email: membership@allergy.org.nz
Website: www.allergy.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
Alström Syndrome International
Website: www.alstrom.org
Alzheimers New Zealand
Phone: 04 387 8264
Freephone: 0800 004 001
Email: admin@alzheimers.org.nz
Website: www.alzheimers.org.nz
Angelman Network
Phone: 021 1382878
Email: angelmannetwork@gmail.com
Website: angelman.org.nz
Anxiety New Zealand Trust
Phone: 09 846 9776
Freephone: 0800 ANXIETY (0800 269 4389)
Email: clinic@anxiety.org.nz
Website: www.anxiety.org.nz
ANZMES – Associated New Zealand Myalgic Encephalopathy (Chronic Fatigue) Society
Phone: 09 269 6374
Email: info@anzmes.org.nz
Website: www.anzmes.org.nz
Apert Network – Support group for Apert and Cranio-Facial syndromes
Phone: 09 476 0251
Email: apert@apert.org.nz
Aphasia New Zealand Charitable Trust
Freephone: 0508 274 274
Email: info@aphasia.org.nz
Website: www.aphasia.org.nz
Arachnoid Cyst Information Network
Email: arachnoidcyst.info@nzord.org.nz
Website: www.arachnoidcyst.org.nz
Arnold Chiari Malformation Support Group
Phone: 020 40013378
Email: acm.info@nzord.org.nz
Website: www.acmsupport.org.nz
Arthritis Foundation of New Zealand
Phone: 04 472 1427
Freephone: 0800 663 463
Email: info@arthritis.org.nz
Website: www.arthritis.org.nz
Association of Blind Citizens
Phone: 04 389 0033
Freephone: 0800-ABC-NZ-INC (0800 222 694)
Email: enquiries@abcnz.org.nz
Website: www.abcnz.org.nz
Asthma and Respiratory Foundation
Phone: 04 499 4592
Email: info@asthmafoundation.org.nz
Website: www.asthmafoundation.org.nz
Asthma New Zealand
Phone: 09 623 0236
Email: anz@asthma-nz.org.nz
Website: www.asthma.org.nz
Ataxia Telangiectasia Support Group
Phone: 03 203 3252 021 211 7838
Email: AtaxiaTinfo@nzord.org.nz
Autism New Zealand
Phone: 04 803 3501
Freephone: 0800 288 476
Email: info@autismnz.org.nz
Website: www.autismnz.org.nz
AVM Survivors – international group
Facebook: www.facebook.com/avmsurvivors/
Balance, New Zealand Bipolar Network – Support for those affected by bipolar disorder (manic depression)
Phone: 03 366 3631
Email: info@balance.org.nz
Website: www.balance.org.nz
Batten Disease Support Group – c/- Lysosomal Diseases New Zealand
Phone: 07 544 8868
Email: lysosomal.info@nzord.org.nz
Website: www.ldnz.org.nz
Beckwith–Wiedemann Children's Assn of NZ (Inc)
Phone: 021 922213
Email: Carolyn@bwcanz.org
Website: www.bwcanz.org
Blind Foundation
Phone: 09 355 6900
Freephone: 0800 243 333
Email: GeneralEnquiries@blindfoundation.org.nz
Website: blindfoundation.org.nz
Bowel Group for Kids – support for children with Hirschprung's disease or imperforate anus; an Australian group with a New Zealand contact
Phone: 0274 435 457
Email: nz@bgk.org.au
Website: www.bgk.org.au
Brain Injury Association of New Zealand (Auckland) – has contacts for other areas
Email: information@brain-injury.org.nz
Website: www.brain-injury.org.nz
Brain Injury Waikato
Phone: (07) 839 1191
Email: admin@braininjurywaikato.org.nz
Website: www.braininjurywaikato.org.nz
Cardiac Inherited Diseases Group
Phone: 09 3074949 09 3074949 ext 23634
Email: CIDGadmin@adhb.govt.nz
Website: www.cidg.org
Carers New Zealand – Information and advocacy for family/whanau carers
Phone: 09 406 0412
Freephone: (0800) 777 797
Email: info@carers.net.nz
Website: www.carers.net.nz
CCS Disability Action – Support, advocacy and services for people with physical disabilities
Phone: 04 5678910
Freephone: 0800 227 2255
Email: info@ccsdisabilityaction.org.nz
Website: www.ccsdisabilityaction.org.nz/
CDKL5 Support Group
Email: kelly.geoff@hotmail.com
Cerebral Palsy Society
Freephone: 0800 503 603
Email: cpsociety@cpsociety.org.nz
Website: www.cerebralpalsy.org.nz
CHARGE Syndrome Association of Australasia
Phone: 09 5370704
Email: Kelsey.Dalton@chargesyndrome.org.nz
Website: www.chargesyndrome.org.au
Chromosome18 Registry & Research Society (Australasia) – Chromosome 18
Phone: 03 208 3161
Email: admin@chromosome18.org.au
Website: www.chromosome18.org
Facebook: www.facebook.com/chromosome18Registry
Chronic Migraine Awareness Australia and New Zealand
Website: www.facebook.com/groups/CMAAussieNZ/
Cleft New Zealand
Freephone: 0800 4 CLEFT (0800 425 338)
Email: info@cleft.org.nz
Website: www.cleft.org.nz
Cloud 9 Children's Foundation – Support for Asperger's Syndrome
Phone: 04 232 4795
Email: admin@cloud9foundation.co.nz
Website: www.withyoueverystepoftheway.com
Coeliac New Zealand
Phone: 09 820 5157
Email: admin@coeliac.org.nz
Website: www.coeliac.org.nz
Facebook: www.facebook.com/Coeliac.New.Zealand
Complex Care Group
Phone: 09 443 5786 (Auckland)
Freephone: 0800 852 693 (outside Auckland)
Website: www.complexcaregroup.org.nz
Complex Regional Pain Charitable Trust – CRPS
Email: info@kiwicrps.co.nz
Website: www.kiwicrps.co.nz
Congenital Cytomegalovirus Support Group
Phone: 03 543 2621
Email: cc.info@nzord.org.nz
Congenital Dyserythropoietic Anemia Support Group
Phone: 021 048 2790
Email: cda.info@nzord.org.nz
Congenital Hyperinsulinism International (CHI) – USA-based international group
Phone: 00 1 973 464 1263
Email: jschmitt@congenitalhi.org
Website: congenitalhi.org
Continence NZ – support for bedwetting and soiling problems
Phone: 09 238 3172
Freephone: 0800 650 659
Email: info@continence.org.nz
Website: www.continence.org.nz
Cornelia de Lange Syndrome Support Group
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
Phone: 09 436 1113
Email: info@criduchat.org.nz
Website: www.criduchat.org.nz
Crohn's and Colitis New Zealand
Freephone: 0800 275423
Email: info@crohnsandcolitis.org.nz
Website: www.crohnsandcolitis.org.nz
Cure Kids – (previously Child Health Research Foundation)
Phone: 09 370 0222
Email: admin@curekids.org.nz
Website: www.curekids.org.nz
Cystic Fibrosis New Zealand
Phone: 09 308 9161
Freephone: 0800 651 122
Email: info@cfnz.org.nz
Website: www.cfnz.org.nz
Deaf Aotearoa New Zealand
Phone: 09 828 3282
Email: national@deaf.org.nz
Website: www.deaf.org.nz
Deafblind New Zealand
Phone: 04 232 2346
Website: www.deafblind.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
Phone: 04 389 7316
Email: debra@debra.org.nz
Website: www.debra.org.nz
Diabetes New Zealand
Phone: 04 499 7145
Freephone: For general and information pamphlets phone: 0800 DIABETES (0800 342 238)
Email: admin@diabetes.org.nz
Website: www.diabetes.org.nz
Diabetes Youth New Zealand
Phone: 09 623 2508
Email: contact@diabetesyouth.org.nz
Website: www.diabetesyouth.org.nz
Online Forum: www.facebook.com/diabetesyouthnz
Doors Syndrome Support Group
Phone: 09 626 4115
Email: doors.info@nzord.org.nz
Down Syndrome Association
Phone: 0800 693 724
Freephone: 0800 NZDSAI; 0800 693 724 press 3 for your closest group
Email: national.coordinator@nzdsa.org.nz
Website: www.nzdsa.org.nz
DPA (NZ) Inc – Disabled Persons Assembly
Phone: 04 801 9100
Email: gen@dpa.org.nz
Website: www.dpa.org.nz
Dyslexia Foundation of New Zealand
Email: info@dfnz.org.nz
Website: www.dyslexiafoundation.org.nz
Dyspraxia Support Group of New Zealand
Phone: 03 358 3249
Email: dyspraxia.centre@xtra.co.nz
Website: www.dyspraxia.org.nz
Ectodermal Dysplasia Support Group
Phone: 021 190 1158
Email: ectodermaldysplasia.info@nzord.org.nz
Ehlers–Danlos Advocacy Organisation
Email: info@EDAO.org.nz
Ehlers–Danlos Society New Zealand
Website: www.ehlers-danlos.org.nz
Emerge Supported Employment Trust – supported employment agency working with clients with disabilities
Phone: 04 3847456
Email: enquiries@emergetrust.org.nz
Website: www.emergetrust.org.nz
Enable New Zealand – Information service for people with disabilities
Phone: 06 353 5800
Freephone: 0800 17 1981
Email: info@enable.co.nz
Website: enable.co.nz
Epilepsy New Zealand
Phone: 07 834 3556
Freephone: 0800 EPILEPSY ( 0800 374 53779)
Email: national@epilepsy.org.nz
Website: www.epilepsy.org.nz
Essential Tremor Support Group
Phone: 0508 873 667
Email: nzetsg@gmail.com
Website: www.essentialtremor.org.nz
Fabry Australia
Phone: 021 0749 667
Email: elizabethlhunt6@gmail.com
Website: www.fabry.com.au
Facebook: www.facebook.com/FabryAust
Fabry Disease Support Group – c/- Lysosomal Diseases New Zealand
Phone: 07 544 8868
Email: lysosomal.info@nzord.org.nz
Website: www.ldnz.org.nz
Families of Spinal Muscular Atrophy NZ – FSMA NZ
Phone: 021 609 870
Email: fsma.info@nzord.org.nz
Federation of New Zealand Ostomy Societies
Phone: 03 347 2304
Email: secretary@ostomy.org.nz
Website: www.ostomy.org.nz
Fertility New Zealand
Freephone: 0800 333 306
Email: support@fertilitynz.org.nz
Website: www.fertilitynz.org.nz
FHL Support Group – support for familial haemophagocytic lymphohistiocytosis
Phone: 09 236 4233
Email: fhl.info@nzord.org.nz
FMD NZ – support for those living with fibromuscular dysplasia in NZ
Phone: 04 4789736
Email: fmdnz.info@gmail.com
Foetal Anti-Convulsant Syndrome NZ
Phone: 0211894483
Email: denise@facsnz.com
Website: www.facsnz.com
Foundation for Nager and Miller Syndromes – fnms
Phone: 06 755 1749
Email: nagermiller.info@nzord.org.nz
Website: www.nzord.org.nz/nager_and_miller_syndromes, www.fnms.org
Fragile X New Zealand Trust
Phone: 021 044 6299
Freephone: 0508 938 0552
Email: info@fragilex.org.nz
Website: www.fragilex.org.nz
Gastric Reflux Support Network NZ – supporting families coping with gastric reflux, eosinophilic oesophagitis (EoE)/eosinophillic gastrointestinal disorder (EGID) or laryngomalacia
Phone: 022 5855 935
Freephone: 0800 380 517
Email: gastricreflux.info@nzord.org.nz
Website: www.cryingoverspiltmilk.co.nz
Gaucher Association of New Zealand – c/- Lysosomal Diseases New Zealand
Phone: 07 544 8868
Email: gaucher.info@nzord.org.nz
Website: www.ldnz.org.nz
Genetic Health Service NZ – genetic diagnostic and genetic counselling services
Website: www.genetichealthservice.org.nz
Glaucoma New Zealand
Phone: 09 373 8779
Freephone: 0800 GLAUCOMA; 0800 452 826
Email: admin@glaucoma.org.nz
Website: www.glaucoma.org.nz
Grandparents Raising Grandchildren Trust
Phone: 0800 472 637
Email: office@grg.org.nz
Website: www.grg.org.nz
Granulosa Cell Tumour Foundation New Zealand
Email: admin@gctf.org.nz
GROW – A 12 step programme for mental wellness
Phone: Office hours: 1pm-5pm 09 846 6869
Email: auckland@grow.org.nz
Website: www.grow.org.nz
Guillain Barre Syndrome Support Group
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)
Freephone: 0800 15 10 15
Email: info@leukaemia.org.nz
Website: www.leukaemia.org.nz
Haemophilia Foundation of New Zealand
Phone: 03 371 7477
Email: info@haemophilia.org.nz
Website: www.haemophilia.org.nz
Hearing Association of New Zealand
Phone: 06-367 9069
Freephone: 0800-23 34 45
Email: office@hearing.org.nz
Website: www.hearing.org.nz
Heart Kids NZ – Supporting heart kids through life
Phone: 09 377 9950
Freephone: 0800 543 943 (0800 KIDZ HEARTS)
Email: info@heartnz.org.nz
Website: www.heartnz.org.nz
Hospice New Zealand
Phone: 04 381 0266
Email: admin@hospice.org.nz
Website: www.hospice.org.nz
Huntington's Disease Association (Auckland) – has contacts for other regions
Phone: 09 815 9703
Freephone: 0800 432 825
Email: huntingtonsakld@xtra.co.nz
Website: www.huntingtons.org.nz
Hypoparathyroidism New Zealand
Website: www.facebook.com/HypoPARAnz/
Idiopathic Hypersomnia Australia
Website: www.hypersomnolenceaustralia.org.au
Facebook: www.facebook.com/hypersomnolenceaustralia
IHC New Zealand – advocacy and support for intellectual disability
Phone: 04 472 2247
Freephone: 0800 442 442
Email: librarian@ihc.org.nz
Website: www.ihc.org.nz
Immune Deficiencies Foundation of New Zealand IDFNZ / Kids Foundation
Phone: 09 523 5550
Freephone: 0508 300 600
Email: info@idfnz.org.nz
Website: www.idfnz.org.nz
Kidney Health New Zealand
Phone: 03 353 1242
Freephone: 0800 543 639
Email: info@kidneys.co.nz
Website: www.kidneys.co.nz
Kidney Kids of New Zealand
Phone: 09 574 2382
Freephone: 0800 215 437
Email: admin@kidneykids.org.nz
Website: www.kidneykids.org.nz
Kidney Society Auckland
Phone: 09 278 1321
Freephone: 0800 235 711
Email: kidneysociety@adks.co.nz
Website: www.kidneysociety.co.nz
Klippel Trenaunay Support Group
Phone: 03 344 1090
Email: KT.info@nzord.org.nz
Kāpō Māori Aotearoa New Zealand Inc. – support group for blind Māori
Phone: 06 878 9440
Freephone: 0800 770 990
Email: info@kapomaori.com
Website: www.kapomaori.com
LAM Charitable Trust – Support group for Lymphangeoleiomyomatosis, commonly known as LAM
Phone: 09 376 4936
Email: director@lam.org.nz
Website: www.lam.org.nz
Learning and Behaviour Trust – LBCTNZ
Email: pinkipip@me.com
Website: www.lbctnz.co.nz
Leukaemia & Blood Cancer new zealand – LBC (Myelodysplastic syndrome)
Phone: 09 638 3556
Freephone: 0800 15 10 15
Email: supportservices@leukaemia.org.nz
Website: www.leukaemia.org.nz
Leukaemia and Blood Cancer New Zealand
Phone: 09 638 3556
Freephone: 0800 15 10 15
Email: info@leukaemia.org.nz
Website: www.leukaemia.org.nz
Li Fraumeni Syndrome Association – New Zealand chapter
Phone: 027 4171449
Email: sarthur@lfsassociation.org
Website: lfsassociation.org
Lichen Sclerosis Support Group
Email: ls.info@nzord.org.nz
Little People of New Zealand
Phone: 07 576 4461
Email: lpnz@gmail.com
Website: www.littlepeople.org.nz
LUPUS New Zealand
Phone: 021 933 109
Freephone: 0800 324 634
Email: lupusnz@gmail.com
Website: www.lupus.org.nz
Lymphoedema Support Network (Auckland) – has contacts for other areas
Phone: 09 625 6463
Email: lymphoedema.info@nzord.org.nz
Website: www.lymphoedema.org.nz
Lysosomal Diseases New Zealand
Phone: 07 544 8868
Email: lysosomal.info@nzord.org.nz
Website: www.ldnz.org.nz
Macular Degeneration New Zealand
Phone: 0800 622 852
Email: info@mdnz.org.nz
Website: www.mdnz.org.nz
Mal de Debarquement Syndrome Support Group – MdDs
Phone: 0276682110
Email: kashider@outlook.com
Website: mddsaustralia.org
MedicAlert Foundation New Zealand
Phone: 04 528 8218
Freephone: 0800 840 111
Email: inquiry@medicalert.co.nz
Website: www.medicalert.co.nz
MELAS Mitochondrial Encephalomyopathy, Lactic Acidosis and Stroke-like episodes – MDANZ
Website: www.mda.org.nz/Neuromuscular-Conditions/Conditions-Overview/Metabolic-Diseases-of-Muscle/MELAS
Facebook: www.facebook.com/groups/1543536872623139/
Mental Health Foundation – information resources and promotion of mental health
Phone: 09 623 4810
Email: info@mentalhealth.org.nz
Website: www.mentalhealth.org.nz
Miscarriage Support Group (Auckland) – has contact details for other regions
Phone: 09 378 4060
Email: support@miscarriagesupport.org.nz
Website: www.miscarriagesupport.org.nz
Moebius and Facial Paralysis Support Group of Australasia
Phone: 027 817 1767
Email: moebius.info@nzord.org.nz
Motor Neurone Disease Association
Phone: 09 624 2148
Email: admin@mnda.org.nz
Website: www.mnda.org.nz
Multiple Sclerosis Society of New Zealand
Phone: 04 499 4677
Freephone: 0800 675 463
Email: info@msnz.org.nz
Website: www.msnz.org.nz
Muscular Dystrophy Association of New Zealand
Freephone: 0800 800 337
Email: info@mda.org.nz
Website: www.mda.org.nz
Myasthenic Gravis Support Group – MG
Phone: 06 376 7560
Email: mg.info@nzord.org.nz
Website: www.mda.org.nz, myastheniagravisnz.wordpress.com
Facebook: www.facebook.com/groups/175747792525315/about/
National Foundation for the Deaf
Phone: 09 307 2922
Freephone: 0800 867 446
Email: enquiries@nfd.org.nz
Website: www.nfd.org.nz
Neonatal Trust
Phone: 027 2492791
Email: info@neonataltrust.org.nz
Website: www.neonataltrust.org.nz
Neurofibromatosis Association of New Zealand
Phone: 09 436 5211
Email: neurofibromatosis.info@nzord.org.nz
Neurological Foundation
Phone: 09 309 7749
Freephone: 0508 272 467
Email: admin@neurological.org.nz
Website: www.neurological.org.nz
New group and group list
New Zealand Acromegaly Society, The

See Acromegaly Society, The New Zealand
New Zealand Dystonia Patient Network
Email: info@dystonia.org.nz
Website: www.dystonia.org.nz
New Zealand Early Menopause Support Group – NZEM
Email: nzem.info@nzord.org.nz
Website: www.earlymenopause.org.nz
Facebook: www.facebook.com/Earlymenonz
New Zealand Federation for Deaf Children
Freephone: 0800 332 324
Email: deafchildren@xtra.co.nz
Website: www.deafchildren.org.nz
New Zealand Gynaecological Cancer Foundation – NZGCF
Phone: 0275 630 147
Email: info@nzgcf.org.nz
Website: nzgcf.org.nz
Facebook: www.facebook.com/NZGCF
New Zealand Liver Transplant Recipients Group
Phone: 09 307 4949 x 6436
Email: aklivert@adhb.govt.nz
Website: www.livers.org.nz
New Zealand Painful Bladder Support Group
Phone: 03 347 9007
Email: weedot@xtra.co.nz
New Zealand Pompe Network

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

See Pulmonary Arterial Hypertension Group, New Zealand
New Zealand Spinal Trust
Phone: 03 383 6881
Email: info@nzspinaltrust.org.nz
Website: www.nzspinaltrust.org.nz
New Zealand Thyroid Disease Support Group
Phone: 09 480 2680
Email: gayervine@slingshot.co.nz
Website: www.thyroidsupport.org.nz
New Zealand Tinnitus and Hyperacusis Support Network
Phone: 09 923 6316
Email: tinnitus@auckland.ac.nz
Website: www.tinnitus.org.nz
New Zealand VIEW – Vision Impaired Empowering Women support group
Phone: 07 348 2765
Email: nzview.info@nzord.org.nz
NZ Adult Onset Still's (AOSD/JIA) Support Group
Facebook: www.facebook.com/groups/1699901620289588/
NZ Foundation for Mast Cell Activation Disorders – MCAD
Facebook: www.facebook.com/groups/mastcellnzsupport/
Occulodentodigital Dysplasia Support Group
Phone: 027 508 1868
Email: od.info@nzord.org.nz
Oncogenic Osteomalacia Support Group
Phone: 02102286387
Email: oo.info@nzord.org.nz
Orthostatic Tremor Support Group
Phone: 03 3197998
Email: OT.info@nzord.org.nz
Osteoporosis New Zealand
Phone: 04 499 4862
Email: info@osteoporosis.org.nz
Website: www.osteoporosis.org.nz
Overeaters Anonymous
Email: info@oaregion10.org
Website: www.oaregion10.org
Oxalosis & Hyperoxaluria Foundation – C/- Kidney Kids of New Zealand
Freephone: 0800 215 437
Email: admin@kidneykids.org.nz
Website: www.kidneykids.org.nz, www.ohf.org
Pain Action in New Zealand
Phone: 03 366 0716
Email: painz@snap.net.nz
Website: www.painz.org.nz
Parent to Parent New Zealand – support to parents of children with special needs
Phone: 07 853 8491
Freephone: 0508 236 236
Email: national@parent2parent.org.nz
Website: www.parent2parent.org.nz
Parenteral Nutrition Down Under Inc. (PNDU) – patient support for parenteral feeding for intestinal failure
Email: contactpndu@gmail.com
Website: www.pndu.org
Parents of Vision Impaired New Zealand
Phone: 07 839 4205
Freephone: 0800 312 019
Email: don@pvi.org.nz
Website: www.pvi.org.nz
Parkinsons New Zealand
Phone: 04 472 2796
Freephone: 0800 473 4636
Email: info@parkinsons.org.nz
Website: www.parkinsons.org.nz
People First – by and for people with intellectual disabilities
Phone: 04 381 3242
Freephone: 0800 206 070
Email: mail@peoplefirst.org.nz
Website: www.peoplefirst.org.nz
Perry Syndrome Support Group
Phone: 03 383 0427
Email: perry.info@nzord.org.nz
Personal Advocacy Trust – support for people with intellectual disability
Phone: 04 385 9175
Email: advocacy@patrust.org.nz
Perthes Support Group
Phone: 027 474 2128
Email: perthesnz@yahoo.com.au
Website: www.kiwigypsynz.wix.com/perthes
PKU New Zealand Charitable Trust
Email: pkunztrust@gmail.com
Facebook: www.facebook.com/PKU-NZ-151040881636935/
PNH Support Association of New Zealand – support for paroxysmal nocturnal haemoglobinuria
Phone: 021 115 3790
Email: admin@pnhsanz.org.nz
Website: www.pnhsanz.org.nz
Polio NZ Inc
Freephone: 0800 476 546 (0800 4 POLIO)
Email: secretary@polio.org.nz
Website: www.polio.org.nz
Polymyositis Support Group
Email: polymyositis.info@nzord.org.nz
Pompe Network, New Zealand
Email: nz.pompe@gmail.com
Website: nzpompenetwork.weebly.com
Porphyria Support Group
Phone: 03 322 8877
Email: porphyria.info@nzord.org.nz
Website: www.porphyria.org.nz
Post Natal Psychosis Support Group
Phone: 027 248 1958
Email: sburwood@ihug.co.nz
Website: www.healthpoint.co.nz/mental-health-addictions/mental-health-addictions/the-post-natal-psychosis-support-group-1
Prader-Willi Syndrome Association of New Zealand
Phone: 09 427 5404
Freephone: 0800 4 PWS HELP ( 0800 4 797 4357)
Email: ceo@pws.org.nz
Website: www.pws.org.nz
Pseudomyxoma Survivor – support network for those affected by pseudomyxoma peritonei (PMP), appendix cancer and other peritoneal surface malignancies; based in the UK but offering support to patients from all over the world
Email: hello@pseudomyxomasurvivor.org
Website: www.pseudomyxomasurvivor.org
Pseudotumor Cerebri/Intracranial Hypertension Support Group
Phone: 021 969 924
Email: pcih.info@nzord.org.nz
Psoriasis Association (Southland) – has contacts for other areas
Phone: 03 216 8662
Email: sthpsor@hyper.net.nz
Website: www.psoriasis.org.nz
PSP Support Network of New Zealand – support for Progressive Supranuclear Palsy
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
PXE International – support for pseudoxanthoma elasticum
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
Facebook: www.facebook.com/groups/254369064687807/
Restless Legs Syndrome Support Group
Phone: 03 548 6398
Email: restlesslegs.info@nzord.org.nz
Retina New Zealand
Phone: 04 299 1801
Freephone: 0800 LOW VIS (0800 569 849)
Email: retina@retina.org.nz
Website: www.retina.org.nz
Rett New Zealand – support for Rett syndrome
Phone: 04 475 9265
Email: rett.info@nzord.org.nz
Website: www.rettsyndrome.org.nz
SAFDA – Support After Foetal Diagnosis of Abnormality
Email: safda.info@nzord.org.nz
Sands New Zealand – Stillbirth and Newborn Death Support
Email: info@sands.org.nz
Website: www.sands.org.nz
Sarcoidosis New Zealand
Facebook: www.facebook.com/groups/1696977167210826/
Save Sight Society
Phone: 04 475 9559
Email: info@savesightsociety.org.nz
Website: www.savesightsociety.org.nz
Scleroderma New Zealand Inc
Phone: 04 479 5548
Email: Diannepurdie@xtra.co.nz
Website: www.scleroderma.org.nz
Facebook: www.facebook.com/SclerodermaNewZealand/
Selective Mutism Parent Support Group
Email: sm.info@nzord.org.nz
SIDS and Kids – 24-hour sudden infant death helpline
Freephone: 0800 164 455
Website: www.sidsandkids.org.nz
Sjogren's Syndrome New Zealand
Phone: 09 478 7041
Email: david@tfdental.co.nz
Website: www.sjogrensnewzealand.co.nz
Skylight Trust – counselling for grief and loss for children and their families
Phone: 04 939 6767
Freephone: 0800 299 100
Email: reception@skylight-trust.org.nz
Website: www.skylight.org.nz
Sleep Apnoea Association of New Zealand
Phone: 07 854 0462
Email: saanz.secretary@gmail.com
Website: www.sleepapnoeanz.org.nz
SPELD – support group for Dyslexia and other learning disabilities
Phone: 09 624 0839
Freephone: 0800 773 536
Email: admin@speld.org.nz
Website: www.speld.org.nz
Spina Bifida Association of New Zealand
Phone: 07 827 4239
Email: spinabifidanz@zoho.com
Website: www.spinabifida.org.nz
Online Forum: www.facebook.com/groups/SpinabifidaNZ
St John Caring Caller – support for those who are housebound or live alone
Freephone: 0800 ST JOHN (0800 485 646)
Email: enquiries@stjohn.org.nz
Website: www.stjohn.org.nz/What-we-do/Community-programmes/Caring-caller/
Stevens–Johnson Syndrome
Phone: 09 4026969/0211948130
Email: karl.niki70@gmail.com
Stiff Man Syndrome UK and Ireland Support Group – UK-based group
Website: www.smssupportgroup.co.uk, www.livingwithsps.com
Stroke Foundation of New Zealand
Phone: 04 472 8099
Freephone: 0800 STROKE (0800 787653)
Email: strokenz@stroke.org.nz
Website: www.stroke.org.nz
Superficial Siderosis Support Group
Phone: 03 434 5644
Email: sssurvivors@gmail.com
Facebook: www.facebook.com/groups/358154280899208/
Supporting Families in Mental Illness
Freephone: 0800 732 825
Email: office@supportingfamiliesnz.org.nz
Website: www.supportingfamilies.org.nz
SWAN NZ – Syndromes Without a Name
Email: swannz@nzord.org.nz
Website: www.swannz.org.nz
Sweets Syndrome
Phone: 06 878 9414
Email: sweetsyndrome.info@nzord.org.nz
Website: helpforsweetssyndromeuk.wordpress.com
TABS New Zealand – support for post traumatic stress disorder after childbirth
Website: www.tabs.org.nz
Tarlov Cyst New Zealand
Phone: 027 498 6667
Email: tarlov.info@nzord.org.nz
Team Telomere
Phone: 027 665 8282
Email: stephensfamilynelson@gmail.com
Website: teamtelomere.org/
Facebook: www.facebook.com/teamtelomere/
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
Tourette's Association of NZ
Phone: 03 332 0989
Email: info@tourettes.org.nz
Website: www.tourettes.org.nz
Transverse Myelitis Support Group
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
Phone: 0274840944
Email: info@turnersyndrome.co.nz
Website: www.turnersyndrome.co.nz
Online Forum: www.facebook.com/pages/TSSG-NZ/212846682016
Unicorn Foundation – Seeking the cure for Neuroendocrine Cancers
Phone: 021 354 342
Email: hello@unicornfoundation.org.nz
Website: www.unicornfoundation.org.nz
Unique – Rare chromosome disorders support
Email: rarechromo@nzord.org.nz
Website: www.rarechromo.org
Vasculitis Support New Zealand
Phone: 03 312 0127
Email: vasculitis.info@nzord.org.nz
Website: www.vasculitis.org.nz
VCFS Support Group – support for Velo Cardio Facial Syndrome
Phone: 09 636 0351
Email: president@22q.org.au
Website: www.22q.org.au/auckland
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
Phone: 027 277 8775
Email: wg.info@nzord.org.nz
Wellington Region ME/CFS Support Inc – WellMe
Phone: 04 232 4033
Freephone: 0800 632 847 for the Wellington Region, 0800 600 113 Horowhenua
Email: information@wellme.org.nz
Website: wellmecfs.wordpress.com
Facebook: www.facebook.com/WellingtonRegionMECFSSupportGroup
Williams Syndrome Association
Phone: 07 8677710 or 027 6372524
Email: wsanz.info@nzord.org.nz
Website: www.williams-syndrome.org.nz
Vayla