Health Topics
Official websites use .gov
A
.gov website belongs to an official government
organization in the United States.
Secure .gov websites use HTTPS
A
lock (
) or https:// means you’ve safely connected to
the .gov website. Share sensitive information only on official,
secure websites.
URL of this page: https://medlineplus.gov/about/general/genetics/supportadvocacygroups/
MedlinePlus invites patient support and advocacy groups to provide feedback on genetics-related content on the website. We would like to acknowledge the contributions of the following groups:
| 11q Research and Resource Group |
| 15q13.3 Research Project |
| 1p36 Deletion Support & Awareness |
| 22q Family Foundation |
| 3q29 Deletion and 3q29 Duplication Patient Registry |
| 48,XXYY Project |
| 4p- Support Group |
| 5p- Society |
| A Twist of Fate - ATS |
| A-T Children's Project |
| About Face International (Canada) |
| Acid Maltase Deficiency Association |
| Action for XP |
| ADCY5.org |
| Adrenoleukodystrophy Foundation |
| Adult Congenital Heart Foundation |
| Adult Polyglucosan Body Disease Research Foundation |
| Advocacy for Neuroacanthocytosis Patients (UK) |
| AKU Society (UK) |
| Alagille Syndrome Alliance |
| Albinism Fellowship (UK) |
| ALD Connect |
| Alex - The Leukodystrophy Charity |
| AliveAndKickn |
| All Things Kabuki |
| Alpha-1 Advocacy Alliance |
| Alpha-1 Foundation |
| Alstrom Syndrome International |
| Alzheimer's Association |
| Alzheimer's and Related Dementias Education and Referral Center |
| American Autoimmune Related Diseases Association |
| American Bladder Cancer Society |
| American Heart Association |
| American Lung Association |
| American Macular Degeneration Foundation |
| American Multiple Endocrine Neoplasia Support |
| American Partnership for Eosinophilic Disorders |
| American Sickle Cell Anemia Association |
| American Society for Deaf Children |
| American Stroke Association |
| AMMF: The Cholangiocarcinoma Charity (UK) |
| ANE International |
| Angelman, Rett, and Prader-Willi Syndromes Consortium |
| Angioma Alliance |
| Apraxia-KIDS |
| APS Foundation of America |
| APS Support UK |
| APS Type 1 Foundation |
| ARPKD/CHF Alliance |
| Arrhythmia Alliance (UK) |
| Arrhythmogenic Right Ventricular Dysplasia/Cardiomyopathy Program |
| Arthrogryposis Group (UK) |
| ARVD/C Patient Registry |
| Association for Creatine Deficiencies |
| Association for Frontotemporal Degeneration |
| Association for Glycogen Storage Disease |
| Association for X and Y Chromosome Variations (AXYS) |
| Ataxia of Charlevoix-Saguenay Foundation (Canada) |
| Ataxia UK |
| Autoinflammatory Alliance |
| Avery's Angels |
| Axenfeld-Rieger Association |
| Bardet Biedl Syndrome Family Association |
| Barth Syndrome Foundation |
| Batten Disease Family Association (UK) |
| Batten Disease Support and Research Association |
| Batten Hope |
| Beat Sarcoma |
| Beyond Batten Disease Foundation |
| Biotinidase Deficiency Family Support Group |
| Birt-Hogg Dube Foundation / Myrovlytis Trust |
| Birth Defect Research for Children |
| Bloom Syndrome Registry |
| Bloom's Syndrome Association |
| Bohring-Opitz Syndrome Foundation |
| Breast Cancer Options |
| Breath of Hope |
| British Dupuytren's Society |
| British Heart Foundation |
| Brittle Bone Society (UK) |
| CADASIL Together We Have Hope |
| Canadian Hemophilia Society |
| Canadian MPS Society |
| Canavan Research Illinois |
| Cardio-Facio-Cutaneous International |
| CARES Foundation |
| Caring Hands Sarcoidosis Foundation |
| CDG Care |
| Celiac Disease Foundation |
| Center for Jewish Genetics |
| Centronuclear Myopathy Project |
| CFC International |
| Champ Foundation |
| Charcot-Marie-Tooth Association |
| Chelsea's Hope: Lafora Children Research Fund |
| CHERAB Foundation |
| Child Growth Foundation |
| Childhood Eye Cancer Trust (UK) |
| Children with SMA Foundation |
| Children's Liver Disease Foundation |
| Children's PKU Network |
| Children's Brittle Bone Foundation |
| Children's Cardiomyopathy Foundation |
| Children's Interstitial and Diffuse Lung Disease Foundation |
| Children's Tumor Foundation |
| Cholangiocarcinoma Foundation |
| Chordoma Foundation |
| Choroideremia Research Foundation |
| Chromosome 18 Registry & Research Society |
| Chromosome 22 Central |
| Chromosome 9 Disorder Advocates |
| Chronic Granulomatous Disorder Society |
| CLIMB (UK) |
| Coalition Duchenne |
| Coffin-Lowry Syndrome Foundation |
| Colon Cancer Alliance |
| Congenital Hyperinsulinism International |
| Congenital Muscle Disease International Registry |
| Cooley's Anemia Foundation |
| Corneal Dystrophy Foundation |
| Cornelia de Lange Syndrome Foundation |
| Costello Kids |
| Costello Syndrome Family Network |
| Creutzfeldt-Jacob Disease Foundation |
| Crohn's & Colitis Foundation |
| Crohn's & Colitis Syndrome Foundation of America |
| Cure AHC |
| Cure CMD |
| Cure HHT |
| Cure Mito Foundation |
| Cure Sanfilippo Foundation |
| Cure VCP Disease |
| CureDuchenne |
| Cutaneous Lymphoma Foundation |
| Cutis Laxa Internationale (France) |
| Cystic Fibrosis Canada |
| Cystic Fibrosis Foundation |
| Cystic Fibrosis Research Inc. |
| Cystinosis Research Foundation |
| Cystinosis Research Network |
| Cystinuria Support Network |
| Dandy-Walker Alliance |
| DebRA UK |
| Dempster Family Foundation |
| Deutsches Register Morbus Adamantiades Behcet |
| Doors Syndrome Support Group (NZ) |
| DOORSsyndome.org |
| DPD Deficiency Foundation |
| Dup 15q Alliance |
| Dupuytren Research Group |
| Dyskeratosis Congenita Outreach |
| EA/TEF Child and Family Support Connection |
| ECD Global Alliance |
| Ectodermal Dysplasia Society |
| Ehlers-Danlos Society |
| Ehlers-Danlos Support - UK |
| Epilepsy Foundation |
| Epilepsy Society UK |
| Erythromelalgia Association |
| European Alliance for Restless Leg Syndrome |
| EyeCare Foundation |
| Fabry International Network |
| Fabry Support & Information Group |
| Familial Dysautonomia Hope Foundation |
| Familial Dysautonomia Now Foundation |
| Families of Spinal Muscular Atrophy |
| Fat Disorders Research Society |
| Fetal Health Foundation |
| Fibrous Dysplasia Foundation |
| Fight ALD |
| Fight for Sight (UK) |
| Fighting Blindness (Ireland) |
| Fighting Blindness Canada |
| FIPA Patients (UK) |
| Focus Foundation |
| FOD (Fatty Oxidation Disorders) Family Support Group |
| Foundation for Prader-Willi Research |
| Friedreich Ataxia Research Alliance |
| Galactosemia Foundation |
| Gaucher Community Alliance |
| George Pantziarka TP53 Trust (UK) |
| GIST Cancer Research Fund |
| GIST Support International |
| Glaucoma Research Foundation |
| Global Foundation for Peroxisomal Disorders |
| GLUT1 Deficiency Foundation |
| Gluten Intolerance Group |
| Gorlin Syndrome Alliance |
| Gorlin Syndrome Group |
| Haemophilia Foundation Australia |
| Hailey-Hailey Disease Society |
| Hannah's Hope Fund |
| HCU Network America |
| HCU Network Australia |
| Headlines Craniofacial Support (UK) |
| Hearing Loss Association of America |
| Hemochromatosis Australia |
| Hemophilia Federation of America |
| Hereditary Leiomyomatosis and Renal Cell Cancer Family Alliance |
| Hereditary Spherocytosis Support Group |
| Hermansky-Pudlak Syndrome Network |
| Hidradenitis Supporativa Foundation |
| Histiocytosis Association |
| Hormone Health Network |
| HSAN1E Society |
| Hunter's Hope Foundation |
| Huntington Disease Society of America |
| Hydrocephalus Association |
| Hyper IgM Foundation |
| Hypermobility Syndromes Association (UK) |
| Hypertrophic Cardiomyopathy Association |
| Hypoparathyroidism Association |
| Ichthyosis Support Group (UK) |
| ICP Support |
| Immune Deficiency Foundation |
| Inflammatory Breast Cancer Research Foundation |
| InterConnect Support |
| Intermountain PKU & Allied Disorders Association |
| International Advocate for Glycoprotein Storage Diseases |
| International Bipolar Foundation |
| International Dupuytren Society |
| International Essential Tremor Foundation |
| International Foundation for Autoimmune Arthritis |
| International Foundation for CDKL5 Research |
| International Foundation for Optic Nerve Disease |
| International FOXG1 Syndrome Foundation |
| International League Against Epilepsy |
| International Pemphigus & Pemphigoid Foundation |
| International Pleuropulmonary Blastoma Registry |
| International Prader-Willi Syndrome Organization |
| International Rett Syndrome Foundation |
| International Sacral Agenesis/ Caudal Regression Association |
| International Society for Mannosidosis and Related Diseases |
| International WAGR Syndrome Association |
| International Waldenstrom's Macroglobulinemia Foundation |
| Iowa PKU Foundation |
| Iron Disorders Institute |
| Jain Foundation |
| Jeffrey Modell Foundation |
| Joshua Frase Foundation |
| Joubert Syndrome and Related Disorders Foundation |
| Kabuki Syndrome Foundation |
| Kabuki Syndrome Network |
| KBG Foundation |
| Kennedy Disease Association |
| Kennedy's 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 |
| Larsen Syndrome Resource Center |
| Lesch-Nyhan Disease International Study Group |
| Leukemia & Lymphoma Society |
| Lewy Body Dementia Association |
| LGS Foundation |
| Li-Fraumeni Syndrome Association |
| Life Raft Group |
| Lipodystrophy United |
| Little People of America |
| Littlest Tumor Foundation |
| Loeys-Dietz Syndrome Foundation |
| Lowe Syndrome Association |
| Lupus and Allied Diseases Association |
| Lymphatic Research Foundation |
| Lymphoedema Support Network |
| Lymphoma Research Foundation |
| M-CM Network |
| Macular Degeneration Foundation |
| Macular Degeneration Support |
| Macular Society (UK) |
| Marinesco-Sjogren Syndrome Support Group |
| mct8.org |
| Menkes Foundation |
| Metabolic Support UK |
| MHE Research Foundation |
| Migraine Trust |
| Mito Foundation (Australia) |
| MitoAction |
| Mitochondrial Medicine Society |
| MJD Foundation (Australia) |
| 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 |
| Narcolepsy Network |
| National Adrenal Diseases Foundation |
| National Ataxia Foundation |
| National Blood Clot Alliance |
| National Down Syndrome Society |
| National Fabry Disease Foundation |
| National Fragile X Foundation |
| National Gaucher Foundation |
| National Hemophilia Foundation |
| National Marfan Foundation |
| National MPS Society |
| National Multiple Sclerosis Society |
| National Neutropenia Network |
| National Organization for Albinism and Hypopigmentation |
| National PKU Alliance |
| National Tay Sachs and Allied Disorders |
| National Urea Cycle Disorders Foundation |
| NBIA Disorders Association |
| Nemaline Myopathy Support Group |
| Nerve Tumors UK |
| Neurofibromatosis Midwest |
| NF Network |
| NF2 BioSolutions |
| No Stomach for Cancer |
| NOMID Alliance |
| Noonan Syndrome Association (UK) |
| Nystagmus Network |
| Organic Acidemia Association |
| Osteogenesis Imperfecta Foundation |
| Ovarian Cancer Research 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 |
| PCOS Awareness Association |
| Periodic Paralysis Association |
| Periodic Paralysis International (Canada) |
| Perry Syndrome Support Group (New Zealand) |
| Peutz-Jehgers Syndrome & Juvenile Polyposis Syndrome Online Support Group |
| Phelan-McDermid Syndrome Foundation |
| PID UK |
| PIP-UK |
| Pitt Hopkins Research Foundation |
| PKD Foundation |
| PKS Kids |
| Platelet Disorder Support Association |
| Poland Syndrome Support Group (UK) |
| Potocki Shaffer Syndrome (Australia) |
| Preeclampsia Foundation |
| Primary Ciliary Dyskinesia Foundation |
| Progeria Research Foundation |
| Progressive Osseous Heteroplasia Association |
| Propionic Acidemia Foundation |
| PSP Association |
| PTEN Foundation |
| PTEN World |
| Pull-thru Network |
| Pulmonary Hypertension Association |
| PVNH Support & Awareness |
| PXE International |
| Pyridoxine-Dependent Seizures Registry |
| Rare Anemias Foundation |
| RASopathies Network |
| Raynaud's & Scleroderma Ireland |
| RegiSCAR Project |
| Ring 14 International (Italy) |
| RP Fighting Blindness (UK) |
| RYR-1 Foundation |
| SADS Foundation |
| Sanfilippo Children's Foundation (Australia) |
| Sarcomeric Human Cardiomyopathies Registry |
| SATB2 Gene Foundation |
| SCA6 Network |
| Schizophrenia and Related Disorders Alliance of America |
| SCID, Angels for Life Foundation |
| Scleroderma & Raynaud's UK |
| SETBP1 Society |
| Severe Chronic Neutropenia International Registry |
| Sharsheret |
| Sickle Cell Information Center |
| Simons Searchlight |
| Sitosterolemia Foundation |
| Sjogren's Syndrome Foundation |
| Snow Foundation |
| Snyder-Robinson Foundation |
| Soft Bones |
| Spastic Paraplegia Foundation |
| Spinal Muscular Atrophy UK |
| Spondylitis Association of America |
| Stennis Foundation |
| Stevens-Johnson Syndrome Foundation |
| Stickler Involved People |
| Stop ALD Foundation |
| StopCAIDnow |
| Support for People with Oral and Head and Neck Cancer Inc. |
| Support Organization for Trisomy in Australia |
| Tatton Brown Rahman Syndrome Community |
| Taylor Bugs Kisses Foundation |
| Team Sanfilippo Foundation |
| Team Titin |
| Testicular Cancer Awareness Foundation |
| Thyroid Foundation of Canada |
| Timothy Syndrome Alliance |
| Tourette Association of America |
| Tourette Syndrome Association |
| Transverse Myelitis Association |
| Treacher Collins Family Support Group (UK) |
| Trimethylaminuria Foundation |
| Triple X Support Group |
| Trisomy 18 Foundation |
| Tuberous Sclerosis Alliance |
| Turner Syndrome Foundation |
| Turner Syndrome Society of the United States |
| Tyrosinemia Society |
| Unique (UK) |
| United Leukodystrophy Foundation |
| United Mitochondrial Disease Foundation |
| United MSD Foundation |
| Urea Cycles Disorder Consortium |
| Usher 1F Collaborative |
| Usher III Initiative |
| Usher Syndrome Coalition |
| Vascular Birthmarks Foundation |
| Vascular Cures |
| VCFS Texas |
| Vestibular Disorders Association |
| VHL Family Alliance |
| Vici Syndrome Organization |
| Vitiligo Research Foundation |
| Vitiligo Support International |
| Wagner Syndrome Foundation |
| Werner Syndrome Registry |
| Williams Syndrome Association |
| Williams Syndrome Changing Lives Foundation |
| Williams Syndrome Foundation (UK) |
| Wilms Cancer Foundation |
| Wilson Disease Association |
| Wolfram Syndrome UK Support Group |
| Worldwide Society of Wolfram Syndrome Families |
| Xia-Gibbs Society |
| XLP Research Trust |
| ZERO - The End of Prostate Cancer |