Useful Links

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.

Human Genetics Society of Australasia

European Society of Human Genetics

The American Society of Human Genetics

The American College of Medical Genetics

Society of Craniofacial Genetics

International Federation of Human Genetics

British Society of Human Genetics

The Human Genome Organisation

Human Genome Variation Society

A . B . C . D . E . F . G . I . J . K . L . M . N . O . P . R . S . T . U . V . W
Syndrome Name		POSSUM Number
A	Aarskog Syndrome Parents Support Group (USA) Aicardi Syndrome Foundation Alagille Syndrome Alliance Alport Syndrome Home Page Alstrom syndrome: International Alstroms Syndrome Newsletter American Cleft Palate-Craniofacial Association (ACPA) Androgen Insensitivity Syndrome (AIS) Support Group Australia Angelman Syndrome Foundation, Inc Alkaptonuria Society Ataxia-Telangiectasia Children's Project	3001 3018 3019 4509 3020 4441 3462 5998 3033
B	Bardert-Biedl, Laurence-Moon Batten Disease Support & Research Assn Beckwith-Wiedemann Support Network Birth Disorder Information Directory Blepharophimosis,Ptosis,Epicanthus Inversus Family Network	3113 3333 3036 3230
C	CardioFacioCutaneous Syndrome Foundation CDG Syndrome Charcot-Marie-Tooth Association CHARGE Syndrome Fdn Chromosome 8 Home Page (Wells Labs) Chromosome 9p- Network Chromosome 11q: European Chromosome 11Q Network Chromosome 18 Support Groups Chromosome 22 Central Coffin-Lowry Syndrome Foundation Coffin-Siris Syndrome Support Group Cornelia de Lange Syndrome Foundation Cri-du-Chat Syndrome Support Group Crouzon's Support Network	3627 5223 4384 3480 3416, 3184 3081 3087 3094, 3702, 3095,3096, 3699 3132, 3186, 5359, 3703, 3267 3150 3151 3183 3073 3158
D	DiGeorge Syndrome Down Syndrome WWW Page Dubowitz Syndrome Support Dwarfism/Short Stature	3132, 3186 3100 3187
E	Ehlers-Danlos National Foundation Ectodermal dysplasias: National Foundation for Ectodermal Dysplasia	3212, 3128, 3406, 3203, 5410, 3392, 3264, 3482 3208, 3209, 3524, 3137
F	Fabry Disease Home Page Facio-Scapulo-Humeral Society, Inc FG Syndrome Family Alliance Fibrodysplasia Ossificans Progressiva: International Fibrodysplasia Ossificans Progressiva Association Foetal Alcohol Syndrome: National Organization on Fetal Alcohol Syndrome Foetal Alcohol Syndrome Fragile X: National Fragile X Foundation Fragile X: FRAXA Research Foundation, Inc Freeman-Sheldon Parent Support Group	3023 5500 3566 3223 3218 3218 3324 3324 3156
G	Galactosaemia: Parents of Galactosemic Children, Inc Gaucher: Gauchers Association Goldenhar Syndrome Research and Information Fund	3789 4540 3339
I	Incontinentia Pigmenti :National Incontinentia Pigmenti Foundation	3265
J	Jeune's Family Support Group Joubert Syndrome Foundation Corp	3032 3593
K	Kabuki Syndrome Support Kabuki Syndrome: Supporting Aussie kids with Kabuki Syndrome Klippel-Feil syndrome: KFS Connection Klinefelter Syndrome Association, Inc Kniest Syndrome Support	3541 3541 3274 3107 3272
L	Langer-Giedion Syndrome Association Laurence Moon Bardet Biedl Syndrome Network Lissencephaly Network, Inc Lowe Syndrome Association, Inc	3416 3276,3113 3134, 5741 3340
M	MAGIC Foundation for Children's Growth Mannosidosis: International Society for Mannosidosis & Related Disorders March of Dimes Birth Defects Foundation Marfan Syndrome: National Marfan Foundation Marinesco-Sjogren Syndrome Support Website Mitochondrial disorders: United Mitochondrial Disease Foundation Moebius Syndrome Foundation MPS: National MPS Society Myotublar Myopathy Resource Group	4458, 3745 3285 3438 3217 3308, 3309, 3310, 3311, 3312, 3313, 3314, 3315 5502
N	Nager syndrome: Foundation for Nager and Miller Syndromes Nail Patella Syndrome Support Neurofibromatosis: National Neurofibromatosis Foundation Neurofibromatosis: Neurofibromatosis Inc Niemann-Pick: National Niemann-Pick Disease Foundation, Inc Noonan Syndrome: Noonan Syndrome Support Group Norrie Disease Association	3143,3487 3331 3332, 4258 3332, 4258 3334 3335 3336
O	Ollier & Maffucci Syndrome Opitz G/BBB Support Opitz Trigonocephaly Syndrome Family Network (OTSFN) Osler hemorrhagic telangiectasia syndrome Osteogenesis Imperfecta (OI) Foundation	3121, 3759 3239, 3258 3048 3760 3349, 4350, 4351, 3366, 5691, 5692
P	Phenylketonuria: National PKU News Pierre Robin Nework Prader-Willi: Prader-Willi Syndrome Association of Victoria Prader-Willi: International Prader Willi Syndrome Association Prader-Willi: Prader-Willi Syndrome Association The Proteus Syndrome Foundation Prune Belly Syndrome Network Pseudoxanthoma Elasticism International	3533 3371 3361 3361 3361 3515 3003 3345
R	Rare Genetic Diseases in Children Rett syndrome: International Rett Syndrome Association Rett Syndrome Research Foundation Rett syndrome: Rett Syndrome Association UK Rubinstein-Taybi Russell-Silver: Association for Children with Russell-Silver Syndrome	3796 3796 3796 3384 3385
S	Septo-Optic-Dysplasia Support Group Shwachman-Diamond America Sotos Syndrome Support Association Spina Bifida Association of America Spina Bifida Resource Page Association for Spina Bifida and Hydrocephalus Spondyloepiphyseal Dysplasia (SED) and Spondylometaphyseal Dysplasia (SMD) Stickler Syndrome Support Group Sturge-Weber Foundation Sturge-Weber Foundation (Canada) Inc.	3398 3453 3055 3720 3720 3720 3030 3397 3397
T	Tay-Sachs: National Tay-Sachs and Allied Diseases Association Trisomy 18, 13 and related disorders: S.O.F.T Trisomy 9 Support Treacher-Collins Foundation Tuberous Sclerosis Alliance Turner's Syndrome Society of the United States	3244 3094, 3090 3080 3283 3417 3104
U	Urea Cycle Disorders : National Urea Cycle Disorders Foundation	3028, 4809
V	VATER Association VATER Connection VCF Information Page Velo-Cardio-Facial Syndrome Educational Foundation Von Hippel-Lindau Syndrome : VHL Family Alliance and VHL Syndrome Homepage	3425 3425 3132 3132 3676
W	Williams Syndrome Association & Home Page Williams Syndrome Foundation Home Page WAGR/Aniridia Network	3427 3427 3024