URL of this page: https://medlineplus.gov/about/general/genetics/supportadvocacygroups/

Patient support and advocacy groups

Through a partnership with Genetic Alliance, 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
ADCY5.org
Adrenoleukodystrophy Foundation
Adult Congenital Heart 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
Alzheimer's and Related Dementias Education and Referral Center
American Autoimmune Related Diseases Association
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 Type 1 Foundation
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
Batten Disease Support and Research Association
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
Breath of Hope
British Dupuytren's Society
British Heart Foundation
Brittle Bone Society (UK)
CADASIL Together We Have Hope
Canadian Hemophilia Society
Canavan Research Illinois
Cardio-Facio-Cutaneous International
CARES Foundation
CDG Care
Celiac Disease Foundation
Center for Jewish Genetics
Centronuclear Myopathy Project
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 Syndrome Family Network
Creutzfeldt-Jacob Disease Foundation
Crohn's & Colitis Syndrome Foundation of America
Cure AHC
Cure CMD
Cure HHT
Cure Sanfilippo Foundation
Cure VCP Disease
CureDuchenne
Cutaneous Lymphoma Foundation
Cutis Laxa Internationale (France)
Cystic Fibrosis Canada
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 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 for Sight (UK)
Fighting Blindness (Ireland)
Fighting Blindness Canada
Focus Foundation
FOD (Fatty Oxidation Disorders) Family Support Group
Foundation for Prader-Willi Research
Friedreich Ataxia Research Alliance
Galactosemia Foundation
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
Hailey-Hailey Disease Society
Hannah's Hope Fund
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
Hypermobility Syndromes Association (UK)
Hypoparathyroidism Association
Ichthyosis Support Group (UK)
ICP Support
Immune Deficiency Foundation
International Advocate for Glycoprotein Storage Diseases
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 Society for Mannosidosis and Related Diseases
International WAGR Syndrome Association
Iowa PKU Foundation
Iron Disorders Institute
Jain Foundation
Jeffrey Modell Foundation
Joshua Frase Foundation
Joubert Syndrome and Related Disorders 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
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
Marinesco-Sjogren Syndrome Support Group
mct8.org
Menkes Foundation
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 Fragile X Foundation
National Gaucher Foundation
National Hemophilia Foundation
National Marfan Foundation
National MPS Society
National Multiple Sclerosis Society
National Neutropenia Network
National PKU Alliance
National Tay Sachs and Allied Disorders
National Urea Cycle Disorders Foundation
NBIA Disorders Association
Nemaline Myopathy Support Group
Neurofibromatosis Midwest
NF Network
No Stomach for Cancer
NOMID Alliance
Noonan Syndrome Association (UK)
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
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
Sarcomeric Human Cardiomyopathies Registry
Schizophrenia and Related Disorders Alliance of America
SCID, Angels for Life Foundation
Scleroderma & Raynaud's UK
Severe Chronic Neutropenia International Registry
Sharsheret
Sickle Cell Information Center
Simons Searchlight
Sitosterolemia Foundation
Sjogren's Syndrome Foundation
Snyder-Robinson Foundation
Soft Bones
Spinal Muscular Atrophy UK
Spondylitis Association of America
Stennis Foundation
Stevens-Johnson Syndrome Foundation
Stickler Involved People
Stop ALD Foundation
StopCAIDnow
Support Organization for Trisomy in Australia
Tatton Brown Rahman Syndrome Community
Team Sanfilippo Foundation
Thyroid Foundation of Canada
Tourette Syndrome Association
Transverse Myelitis Association
Trimethylaminuria Foundation
Triple X Support Group
Trisomy 18 Foundation
Tuberous Sclerosis Alliance
Turner Syndrome Foundation
Unique (UK)
United Leukodystrophy Foundation
Urea Cycles Disorder Consortium
Usher 1F Collaborative
Usher III Initiative
Usher Syndrome Coalition
Vascular Birthmarks Foundation
VCFS Texas
Vestibular Disorders Association
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