Patient Support and Advocacy Groups

Through a partnership with Genetic Alliance, Genetics Home Reference invites patient support and advocacy groups to provide feedback on website content. We would like to acknowledge the contributions of the following groups:

  • 1p36 Deletion Support & Awareness
  • 4p- Support Group
  • 5p- Society
  • 11q Research and Resource Group
  • 15q13.3 Research Project
  • A-T Children’s Project
  • A Twist of Fate - ATS
  • About Face International (Canada)
  • Acid Maltase Deficiency Association
  • Adrenoleukodystrophy Foundation
  • Adult Polyglucosan Body Disease Research Foundation
  • Advocacy for Neuroacanthocytosis Patients (UK)
  • AIS-DSD Support Group
  • AKU Society (UK)
  • Alagille Syndrome Alliance
  • Albinism Fellowship (UK)
  • Alpha-1 Advocacy Alliance
  • Alpha-1 Foundation
  • Alstrom Syndrome International
  • Alzheimer's Association
  • American Lung Association
  • American Multiple Endocrine Neoplasia Support
  • American Partnership for Eosinophilic Disorders
  • American Sickle Cell Anemia Association
  • American Society for Deaf Children
  • Angelman, Rett, and Prader-Willi Syndromes Consortium
  • Angioma Alliance
  • APS Foundation of America
  • Association for Creatine Deficiencies
  • Association for Glycogen Storage Disease
  • Ataxia of Charlevoix-Saguenay Foundation (Canada)
  • Ataxia UK
  • Autoinflammatory Alliance
  • Avery’s Angels
  • Bardet Biedl Syndrome Family Association
  • Batten Disease Support and Research Association
  • Beat Sarcoma
  • Beyond Batten Disease Foundation
  • Birt-Hogg Dube Foundation / Myrovlytis Trust
  • Birth Defect Research for Children
  • Bloom Syndrome Registry
  • Bloom’s Syndrome Association
  • Breath of Hope
  • CADASIL Together We Have Hope
  • Canavan Research Illinois
  • Cardio-Facio-Cutaneous International
  • CARES Foundation
  • Celiac Disease Foundation
  • Center for Jewish Genetics
  • Centronuclear Myopathy Project
  • Charcot-Marie-Tooth Association
  • Chelsea’s Hope: Lafora Children Research Fund
  • Child Growth Foundation
  • Children’s Brittle Bone Foundation
  • Children’s Cardiomyopathy Foundation
  • Children’s Interstitial and Diffuse Lung Disease Foundation
  • Children’s Tumor Foundation
  • Chordoma Foundation
  • Choroideremia Research Foundation
  • Chromosome 9 Disorder Advocates
  • Chromosome 18 Registry & Research Society
  • Chromosome 22 Central
  • Chronic Granulomatous Disorder Society
  • CLIMB (UK)
  • Coalition Duchenne
  • Coffin-Lowry Syndrome Foundation
  • Colon Cancer Alliance
  • Congenital Hyperinsulinism International
  • Cooley’s Anemia Foundation
  • Cornelia de Lange Syndrome Foundation
  • Costello Syndrome Family Network
  • Creutzfeldt-Jacob Disease Foundation
  • Crohn's & Colitis Syndrome Foundation of America
  • Cure AHC
  • Cure CMD
  • Cure HHT
  • CureDuchenne
  • Cystic Fibrosis Research Inc.
  • Cystinosis Research Foundation
  • Cystinosis Research Network
  • Cystinuria Support Network
  • Dandy-Walker Alliance
  • Dempster Family Foundation
  • DPD Deficiency Foundation
  • Dyskeratosis Congenita Outreach
  • EA/TEF Child and Family Support Connection
  • Ectodermal Dysplasia Society
  • Ehlers-Danlos Support - UK
  • Epilepsy Society UK
  • Erythromelalgia Association
  • Fabry Support & Information Group
  • Familial Dysautonomia Hope Foundation
  • Familial Dysautonomia Now Foundation
  • Families of Spinal Muscular Atrophy
  • Fighting Blindness (Ireland)
  • FOD (Fatty Oxidation Disorders) Family Support Group
  • Foundation for Prader-Willi Research
  • Friedreich Ataxia Research Alliance
  • Galactosemia Foundation
  • GIST Cancer Research Fund
  • GIST Support International
  • Glaucoma Research Foundation
  • Global Foundation for Peroxisomal Disorders
  • GLUT1 Deficiency Foundation
  • Gluten Intolerance Group
  • Hailey-Hailey Disease Society
  • Hannah's Hope Fund
  • HCU Network Australia
  • Hemochromatosis Australia
  • Hemophilia Federation of America
  • Hereditary Spherocytosis Support Group
  • Hermansky-Pudlak Syndrome Network
  • Hidradenitis Supporativa Foundation
  • Histiocytosis Association
  • Histiocytosis Association of America
  • Hormone Health Network
  • Hunter’s Hope Foundation
  • Huntington Disease Society of America
  • Hypermobility Syndromes Association (UK)
  • ICP Support
  • Immune Deficiency Foundation
  • International Advocate for Glycoprotein Storage Diseases
  • International Essential Tremor Foundation
  • International Foundation for Autoimmune Arthritis
  • International Foundation for Optic Nerve Disease
  • International FOXG1 Syndrome Foundation
  • International Pemphigus & Pemphigoid Foundation
  • International Pleuropulmonary Blastoma Registry
  • International Rett Syndrome Foundation
  • International Society for Mannosidosis and Related Diseases
  • International WAGR Syndrome Association
  • Iron Disorders Institute
  • Jain Foundation  
  • Jeffrey Modell Foundation
  • Joshua Frase Foundation
  • Kabuki Syndrome Network
  • Kennedy Disease Association
  • Kidneeds
  • Kidney Foundation of Canada
  • Kids with Heart National Association for Children’s Heart Disorders
  • Kleefstra Syndrome Community
  • Klippel-Feil Syndrome Alliance
  • Klippel-Feil Syndrome Freedom
  • Klippel-Trenaunay Support Group
  • KS & A
  • LAM Foundation
  • Lesch-Nyhan Disease International Study Group
  • Leukemia and Lymphoma Society
  • Lipodystrophy United
  • Little People of America
  • Littlest Tumor Foundation
  • Lowe Syndrome Association
  • Lupus and Allied Diseases Association
  • Lymphatic Research Foundation
  • Lymphoedema Support Network
  • Macular Degeneration Foundation
  • Macular Degeneration Support
  • Marinesco-Sjogren Syndrome Support Group
  • mct8.org
  • MHE Research Foundation
  • MitoAction
  • Mitochondrial Medicine Society
  • MLD Foundation
  • Moebius Syndrome Foundation
  • Mowat-Wilson Syndrome Foundation
  • MPN Research Foundation
  • MSA Coalition
  • MSUD Family Support Group
  • Mucolipidosis IV Foundation
  • Muscular Dystrophy Canada
  • Myasthenia Gravis Foundation of America
  • Myelin Project
  • Nail Patella Syndrome Worldwide
  • National Blood Clot Alliance
  • National Down Syndrome Society
  • National Fragile X Foundation
  • National Gaucher Foundation
  • National Hemophilia Foundation
  • National Marfan Foundation
  • National MPS Society
  • National Multiple Sclerosis Society
  • National PKU Alliance
  • National Tay Sachs and Allied Disorders
  • NBIA Disorders Association
  • Nemaline Myopathy Support Group
  • NF Network
  • No Stomach for Cancer
  • NOMID Alliance/Autoinflammatory Alliance
  • Pachyonychia Congenita Project
  • Pacific Northwest Friends of FSH Research
  • Paget’s Association (UK)
  • Parent Project Muscular Dystrophy
  • Parents and Researchers Interested in Smith-Magenis Syndrome
  • PCD Family Support Group
  • Periodic Paralysis International (Canada)
  • Perry Syndrome Support Group (New Zealand)
  • Peutz-Jehgers Syndrome & Juvenile Polyposis Syndrome Online Support Group
  • PIP-UK
  • Pitt Hopkins Research Foundation
  • PKD Foundation
  • PKS Kids
  • Poland Syndrome Support Group (UK)
  • Potocki Shaffer Syndrome
  • Preeclampsia Foundation
  • Progeria Research Foundation
  • PSP Association
  • Pull-thru Network
  • Pulmonary Hypertension Association
  • PXE International
  • Pyridoxine-Dependent Seizures Registry
  • Rare Anemias Foundation
  • Raynaud’s & Scleroderma Ireland
  • Ring 14 International (Italy)
  • Sarcomeric Human Cardiomyopathies Registry
  • SCID, Angels for Life Foundation
  • Sitosterolemia Foundation
  • Sjogren's Syndrome Foundation
  • Snyder-Robinson Foundation
  • Spondylitis Association of America
  • Stennis Foundation
  • Stickler Involved People
  • Stop ALD Foundation
  • Support Organization for Trisomy in Australia
  • Tourette Syndrome Association
  • Tranverse Myelitis Association
  • Trimethyaminuria Foundation
  • Triple X Support Group
  • Trisomy 18 Foundation
  • Tuberous Sclerosis Alliance
  • Unique (UK)
  • United Leukodystrophy Foundation
  • Urea Cycles Disorder Consortium
  • VCFS Texas
  • VHL Family Alliance
  • Vitiligo Research Foundation
  • Wagner Syndrome Foundation
  • Werner Syndrome Registry
  • Williams Syndrome Association
  • Williams Syndrome Changing Lives Foundation
  • Wilson Disease Association
  • Wolfram Syndrome UK Support Group
  • Worldwide Society of Wolfram Syndrome Families
  • XLP Research Trust