Support group web links

Showing 154 web links:

Most useful sites

Contact a Family:support group for all conditions,syndromes and disorders www.cafamily.org.uk

UK Self Help Groups ukselfhelp.info

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A

Achondroplasia UK www.achondroplasia.co.uk

Acoustic Neuroma Association BANA www.bana-uk.com

Addison's Disease Self Help Group (UK) www.adshg.org.uk

Adrenoleukodystrophy ALD www.aldfst.org.uk

Agenesis Corpus Callosum CORPAL www.corpal.org.uk

Albinism Fellowship UK www.albinism.org.uk

Alstrom Syndrome UK www.alstrom.org.uk

Amniotic Band Syndrome www.amnioticbandsyndrome.com

Androgen Insensitivity Syndrome AIS www.medhelp.org

Angelman Syndrome ASSERT www.angelmanuk.org

Ankylosing Spondylitis NASS www.nass.co.uk

Anorchidism Support Group freespace.virgin.net

Ante-natal Results and Choices ARC www.arc-uk.org

Anti Phospholipid Syndrome Hughes Syndrome Foundation www.hughes-syndrome.org

Aplastic Anaemia Trust www.theaat.org.uk

Arthrogryposis Group -TAG www.tagonline.org.uk

Ataxia-Telangiectasia Society www.atsociety.org.uk

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Batten Disease Family Association BDFA www.bdfauk.freeserve.co.uk

Birthmark Support Group www.btinternet.com

Bladder Exstrophy Epispadias Support Group BEES www.ukselfhelp.info

Blindness Royal National Institute for the Blind RNIB www.rnib.org.uk

Brittle Bone Society www.brittlebone.org

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Cardiac Risk in the Young CRY www.c-r-y.org.uk

Cardiomyopathy Association www.cardiomyopathy.org

Changing Faces www.changingfaces.org.uk

Charcot Marie Tooth Disease CMT www.cmt.org.uk

Children's Craniofacial Association USA www.ccakids.com

Children's Heart Federation Home Page www.childrensheartfoundation.org

Children's Liver Disease Foundation www.childliverdisease.org

Chromosomal Conditions Support Groups USA www.kumc.edu

Cleft Lip and Palate Association CLAPA www.clapa.com

Cleft Palate Foundation USA www.cleftline.org

Clubfoot.co.uk www.clubfoot.co.uk

Coloboma Heart Restricted Growth CHARGE www.widerworld.co.uk

Congenital Adrenal Hyperplasia Support Group www.cah.org.uk

Congenital Diaphragmatic Hernia CHERUBS USA www.cherubs-cdh.org

Contact a Family:support group for all conditions,syndromes and disorders www.cafamily.org.uk

Cornelia de Lange Syndrome CDLS www.cdls.org.uk

Craniofacial Support Group HEADLINES www.headlines.org.uk

Craniofacial Support Group University Hospital Birmingham www.craniofacial.org.uk

Cri du Chat Syndrome Support Group www.personal.u-net.com

Cystic Fibrosis Trust www.cftrust.org.uk

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D

Diamond Blackfan Anaemia Support Group UK www.diamondblackfan.org

DiGeorge 22q.11.2 or VCFS Max Appeal www.maxappeal.org.uk

DiGeorge Velo-Cardio-Facial Syndrome VCFS www.vcfs.net

DiGeorge Velo-Cardio-Facial Syndrome VCFS Educational Foundation USA www.vcfsef.org

Down Syndrome Educational Trust www.downsed.org

Down's Heart Group www.dhg.org.uk

Down's Syndrome Association www.downs-syndrome.org.uk

Duchenne Family Support Group www.dfsg.org.uk

Dystonia Society www.dystonia.org.uk

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E

Ectodermal Dysplasia Society www.ectodermaldysplasia.org

Ehlers-Danlos Support Group www.ehlers-danlos.org

Encephalitis Information Resource www.encephalitis.info

Epidermolysis Bullosa DEBRA www.debra.org.uk

Eye Conditions Visually Impaired Children LOOK www.look-uk.org

Eyeless www.eyeless.org.uk

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F

Fetal Alcohol Information University of West of England fas-info.uwe.ac.uk

Fetal Alcohol Syndrome Support Network of British Columbia www.fetalalcohol.com

Fragile X National Foundation www.nfxf.org

Fragile X Society www.fragilex.org.uk

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G

Galactosaemia Support Group www.galactosaemia.org

Gastroschisis Exomphalos Extrophies Omphalocele GEEPS www.geeps.co.uk

Gaucher Disease www.gaucher.org.uk

Glaucoma Association IGA www.iga.org.uk

Glycogen Storage Disease AGSD www.agsd.org.uk

Growth hormone deficiency Height Matters GHD www.heightmatters.org.uk

Guillain-Barre GBS www.gbs.org.uk

Gut Motility Disorder Group www.guide-information.org.uk

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H

Haemochromatosis Society UK www.ghsoc.org

Haemophilia Society www.haemophilia.org.uk

Heart Circle South West Children's Heart Circle www.heartcircle.org

Heart UK Hypercholesterolaemia www.heartuk.org.uk

HeartLine for children with heart conditions and their families www.heartline.org.uk

Hereditary Multiple Exostoses EXT Support Group www.ox1.co.uk

Hypermobility Syndrome Association www.hypermobility.org

Hypomelanosis of Ito HITS Family Support www.e-fervour.com

Hypospadias Support Group www.hypospadias.co.uk

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I

Ichthyosis Support Group www.ichthyosis.co.uk

International Birth Defects Information System IBIS SupportOrganisations ibis-birthdefects.org

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Klinefelter Organisation KO www.klinefelter.org.uk

Klinefelter Syndrome Support Group website USA klinefeltersyndrome.org

Klinefelter's Syndrome Association www.ksa-uk.co.uk

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Laurence-Moon-Bardet-Biedl Syndrome LMBBS www.lmbbs.org.uk

Lissencephaly Contact Group www.lissencephaly.org.uk

Little Hearts Matter www.lhm.org.uk

Liver Disorders - British Liver Trust www.britishlivertrust.org.uk

Lowe Syndrome Association www.lowesyndrome.org

Lymphoedema British Lymphology Society www.lymphoedema.org

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M

Marfan Association UK www.marfan.org.uk

Metabolic Diseases and Inborn Errors of Metabolism CLIMB www.climb.org.uk

Micro & Anopthalmic Childrens Society MACS www.macs.org.uk

Miscarriage Association www.miscarriageassociation.org.uk

Mosaic Down Syndrome www.mosaicdownsyndrome.org

Mulptiple Sclerosis Resource Centre www.msrc.co.uk

Muscular Dystrophy Campaign www.muscular-dystrophy.org

Myasthenia Gravis Associaion www.mgauk.org

Myotonic Dystrophy Support Group www.mdsguk.org

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National Association for Down Syndrome USA www.nads.org

National Deaf Children's Society www.ndcs.org.uk

National Kidney Federation www.kidney.org.uk

National Organisation on Fetal Alcohol Syndrome www.nofas.org

National Osteopetrosis Society www.nos.org.uk

Neurofibromatosis Association UK www.nfauk.org

Neurofibromatosis Children's Tumor Foundation USA www.ctf.org

Nevus Outreach USA www.nevus.org

Nevus uk www.nevus.co.uk

Newlife Birth Defects Foundation BDF www.bdfnewlife.co.uk

Newlife Special Source Support Groups Information Service www.specialsource.org

Niemann-Pick Disease Group UK www.nnpdf.org

Nystagmus Network www.nystagmusnet.org

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Optic nerve hypoplasia FOCUS Families www.focusfamilies.org

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Phenylketonuria National Society for PKU www.nspku.org

Pierre Robin Support Group UK www.pierrerobinuk.org

Prader Willi Syndrome Association www.pwsa.co.uk

Primary Ciliary Dyskinesia PCD Family Support UK www.pcdsupport.org.uk

Primary Immunodeficiency Association www.pia.org.uk

Proteus Syndrome Foundation UK www.proteus-syndrome.org.uk

Purine Metabolic Patients Association PUMPA www.pumpa.org

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Restricted Growth Association www.restrictedgrowth.co.uk

Retinitis Pigmentosa British Society BRPS www.brps.org.uk

Retinoblastoma Childhood Eye Cancer Trust www.rbsociety.org.uk

Rubinstein Taybi Syndrome UK Support Group www.rtsuk.org

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Scoliosis Association (UK) www.sauk.org.uk

Self Help UK datadase www.self-help.org.uk

Sense deaf blind www.sense.org.uk

Shwachman-Diamond Support www.shwachman-diamondsupport.org

Sickle Cell Society www.sicklecellsociety.org

Sjogren's Syndrome British Association www.bssa.uk.net

Spina Bifida and Hydrocephalus ASBAH www.asbah.org

Spinal Muscular Atrophy Jennifer Trust www.jtsma.org.uk

Stickler Syndrome Support Group www.stickler.org.uk

Sturge Weber Foundation UK www.sturgeweber.org.uk

Sudden Arrythmic Death Syndrome SADS www.sads.org.uk

Syndromes Without A Name www.undiagnosed.clara.net

Syringomyelia and Hindbrain Hernia The Ann Conroy Trust www.theannconroytrust.org.uk

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Talipes Hips Limbs STEPS www.steps-charity.org.uk

Telangiectasia Self Help Group www.telangiectasia.co.uk

Thalassaemia Society www.ukts.org

Thrombocytopenia Absent Radius TAR Syndrome Support Group www.ivh.se

Tourette Syndrome Association UK www.tsa.org.uk

Tracheo-Oesophageal Fistula and Oesophageal Atresia TOFS www.tofs.org.uk

Treacher Collins Syndrome Family Support Group www.treachercollins.net

Trisomy SOFT www.trisomy.org

Tuberous Sclerosis Association UK www.tuberous-sclerosis.org

Turner Syndrome Support Society www.tss.org.uk

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UK Self Help Groups ukselfhelp.info

Unique - Rare Chromosome Disorder Support Group www.rarechromo.org

Upper Limb Defects REACH www.reach.org.uk

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Von Hippel-Lindau Disease www.vhl.org

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W

Williams Syndrome Foundation www.williams-syndrome.org.uk

Wolf Hirschhorn 4p- Support Group UK www.whs.webk.co.uk

Worster-Drought Syndrome Support Group www.wdssg.org.uk

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Xeroderma Pigmentosa Support Group www.xpsupportgroup.org.uk