Useful Links

The information listed below is provided for informational purposes only. There is no implied endorsement by POSSUM. POSSUM does not promote or endorse participation in any specific organization. Every effort is made to ensure that the details for each entry are as current as possible.

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Syndrome NamePOSSUM Number
Aarskog Syndrome Parents Support Group (USA)3001
Aicardi Syndrome Foundation3018
Alagille Syndrome Alliance3019
Alport Syndrome Home Page4509
Alstrom syndrome: International Alstroms Syndrome Newsletter3020
American Cleft Palate-Craniofacial Association (ACPA)
Androgen Insensitivity Syndrome (AIS) Support Group Australia4441
Angelman Syndrome Foundation, Inc3462
Alkaptonuria Society5998
Ataxia-Telangiectasia Children's Project3033
Bardert-Biedl, Laurence-Moon3276, 3113
Batten Disease Support & Research Assn3333
Beckwith-Wiedemann Support Network3036
Birth Disorder Information Directory
Blepharophimosis,Ptosis,Epicanthus Inversus Family Network3230
CardioFacioCutaneous Syndrome Foundation3627
CDG Syndrome5223
Charcot-Marie-Tooth Association4384
CHARGE Syndrome Fdn3480
Chromosome 8 Home Page (Wells Labs)3416, 3184
Chromosome 9p- Network3081
Chromosome 11q: European Chromosome 11Q Network3087
Chromosome 18 Support Groups3094, 3702, 3095,3096, 3699
Chromosome 22 Central3132, 3186, 5359, 3703, 3267
Coffin-Lowry Syndrome Foundation3150
Coffin-Siris Syndrome Support Group3151
Cornelia de Lange Syndrome Foundation3183
Cri-du-Chat Syndrome Support Group3073
Crouzon's Support Network3158
DiGeorge Syndrome3132, 3186
Down Syndrome WWW Page3100
Dubowitz Syndrome Support3187
Dwarfism/Short Stature
Ehlers-Danlos National Foundation3212, 3128, 3406, 3203, 5410, 3392, 3264, 3482
Ectodermal dysplasias: National Foundation for Ectodermal Dysplasia3208, 3209, 3524, 3137
Fabry Disease Home Page3023
Facio-Scapulo-Humeral Society, Inc5500
FG Syndrome Family Alliance3566
Fibrodysplasia Ossificans Progressiva: International Fibrodysplasia Ossificans Progressiva Association3223
Foetal Alcohol Syndrome: National Organization on Fetal Alcohol Syndrome3218
Foetal Alcohol Syndrome3218
Fragile X: National Fragile X Foundation3324
Fragile X: FRAXA Research Foundation, Inc3324
Freeman-Sheldon Parent Support Group3156
Galactosaemia: Parents of Galactosemic Children, Inc3789
Gaucher: Gauchers Association4540
Goldenhar Syndrome Research and Information Fund3339
Incontinentia Pigmenti :National Incontinentia Pigmenti Foundation3265
Jeune's Family Support Group3032
Joubert Syndrome Foundation Corp3593
Kabuki Syndrome Support3541
Kabuki Syndrome: Supporting Aussie kids with Kabuki Syndrome3541
Klippel-Feil syndrome: KFS Connection3274
Klinefelter Syndrome Association, Inc3107
Kniest Syndrome Support3272
Langer-Giedion Syndrome Association3416
Laurence Moon Bardet Biedl Syndrome Network3276,3113
Lissencephaly Network, Inc3134, 5741
Lowe Syndrome Association, Inc3340
MAGIC Foundation for Children's Growth
Mannosidosis: International Society for Mannosidosis & Related Disorders4458, 3745
March of Dimes Birth Defects Foundation
Marfan Syndrome: National Marfan Foundation3285
Marinesco-Sjogren Syndrome Support Website3438
Mitochondrial disorders: United Mitochondrial Disease Foundation
Moebius Syndrome Foundation3217
MPS: National MPS Society3308, 3309, 3310, 3311, 3312, 3313, 3314, 3315
Myotublar Myopathy Resource Group5502
Nager syndrome: Foundation for Nager and Miller Syndromes3143,3487
Nail Patella Syndrome Support3331
Neurofibromatosis: National Neurofibromatosis Foundation3332, 4258
Neurofibromatosis: Neurofibromatosis Inc3332, 4258
Niemann-Pick: National Niemann-Pick Disease Foundation, Inc3334
Noonan Syndrome: Noonan Syndrome Support Group3335
Norrie Disease Association3336
Ollier & Maffucci Syndrome3121, 3759
Opitz G/BBB Support3239, 3258
Opitz Trigonocephaly Syndrome Family Network (OTSFN)3048
Osler hemorrhagic telangiectasia syndrome3760
Osteogenesis Imperfecta (OI) Foundation3349, 4350, 4351, 3366, 5691, 5692
Phenylketonuria: National PKU News3533
Pierre Robin Nework3371
Prader-Willi: Prader-Willi Syndrome Association of Victoria3361
Prader-Willi: International Prader Willi Syndrome Association3361
Prader-Willi: Prader-Willi Syndrome Association3361
The Proteus Syndrome Foundation3515
Prune Belly Syndrome Network3003
Pseudoxanthoma Elasticism International3345
Rare Genetic Diseases in Children
Rett syndrome: International Rett Syndrome Association3796
Rett Syndrome Research Foundation3796
Rett syndrome: Rett Syndrome Association UK3796
Rubinstein-Taybi3384
Russell-Silver: Association for Children with Russell-Silver Syndrome3385
Septo-Optic-Dysplasia Support Group3398
Shwachman-Diamond America3453
Sotos Syndrome Support Association3055
Spina Bifida Association of America3720
Spina Bifida Resource Page3720
Association for Spina Bifida and Hydrocephalus3720
Spondyloepiphyseal Dysplasia (SED) and Spondylometaphyseal Dysplasia (SMD)
Stickler Syndrome Support Group3030
Sturge-Weber Foundation3397
Sturge-Weber Foundation (Canada) Inc.3397
Tay-Sachs: National Tay-Sachs and Allied Diseases Association3244
Trisomy 18, 13 and related disorders: S.O.F.T3094, 3090
Trisomy 9 Support3080
Treacher-Collins Foundation3283
Tuberous Sclerosis Alliance3417
Turner's Syndrome Society of the United States3104
Urea Cycle Disorders : National Urea Cycle Disorders Foundation3028, 4809
VATER Association3425
VATER Connection3425
VCF Information Page3132
Velo-Cardio-Facial Syndrome Educational Foundation3132
Von Hippel-Lindau Syndrome : VHL Family Alliance and VHL Syndrome Homepage3676
Williams Syndrome Association & Home Page3427
Williams Syndrome Foundation Home Page3427
WAGR/Aniridia Network3024

Useful Links