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 |