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Rare or as they are sometimes called orphan diseases are those conditions which affect only a small percent of the population, therefore those suffering from these conditions will lack the usual support and networking available for more common conditions. The Rare Disease Social Network offers a solution, in part, to that aspect of rare disease.

The Rare Disease Social Network is divided into communities. You join by registering through one of the communities. When you join you are automatically made friends with everyone already in that community. Unlike other social networks, the Rare Disease Social Network focuses on the inclusivity of commonality, rather than exclusivity. You join to connect with people sharing similar experiences, therefore you do not need to wait to find them, you'll already be connected once you join.

Use the Community locator tool to the left or browse the list of 343 communities below. (We are adding dozens of communities daily, so if you can't find the one you need, check back in a few days.)
Complete Rare Disease Communities List (343 communities, and more added each day!)
Aarskog Syndrome (AAS)Aase SyndromeAbetalipoproteinemiaAblepharon Macrostomia Syndrome (AMS)AchalasiaAchard Thiers SyndromeAchondrogenesisAchondroplasiaAchromatopsia (ACHM)Acne RosaceaAcoustic NeuromaAcrodermatitis EnteropathicaAcrodysostosisAcromegalyAcromesomelic DysplasiaAcromicric DysplasiaACTH DeficiencyAcute Intermittent Porphyria (AIP)Acute Lymphocytic Leukemia (ALL)Acute Myeloid Leukemia (AML)Adams Oliver Syndrome (AOS)Addison’s DiseaseAdenoid Cystic Carcinoma (AdCC)Adenylosuccinate Lyase DeficiencyAdie SyndromeAdrenoleukodystrophyAdult Polyglucosan Body Disease (APBD)Agenesis of Corpus Callosum (ACC)Ahumada-Del Castillo SyndromeAicardi Syndrome ALA-D PorphyriaAlagille SyndromeAlbinismAlexander DiseaseAlkaptonuriaAllan Herndon SyndromeAlopecia Areata (AA)Alpers DiseaseAlpha Thalassemia X-linked Mental Retardation Syndrome (ATR-X)Alpha-1-Antitrypsin Deficiency (A1AD)Alpha-MannosidosisAlport SyndromeAlstrom SyndromeAlternating Hemiplegia of Childhood (AHC)Alveolar Capillary Dysplasia (ACD)Alveolar Soft Part Sarcoma (ASPS)AmeloblastomaAmelogenesis ImperfectaAmniotic Band Syndrome (ABS)AmyloidosisAmyotrophic Lateral Sclerosis (ALS)AnencephalyAngelman SyndromeAngioimmunoblastic with Dysproteinemia Lymphadenopathy (AILD)AniridiaAnkylosing Spondylitis (AS)AnodontiaAntiphospholipid Syndrome (APS)Antithrombin deficiencyAntley Bixler SyndromeAPECED SyndromeApert SyndromeAplasia Cutis CongenitaAplastic AnemiaApraxiaArachnoid CystsArachnoiditisArginase DeficiencyArgininosuccinic AciduriaArnold-Chiari Malformation (ACM)Arterial Tortuosity Syndrome (ATS)Arteriosclerotic RetinopathyArthrogryposis Multiplex Congenita (AMC)Asherman’s Syndrome (AS)Aspartylglycosaminuria (AGU)AspergillosisAsphyxiating Thoracic Dystrophy (ATD)AstrocytomaAtaxia and Retinitis Pigmentosa Neuropathy (NARP)Ataxia Telangiectasia (A-T)Ataxia with Vitamin E Deficiency (AVED)Atopic Dermatitis (AD)Atrial Septal Defects (ASD)Atrioventricular Septal Defect (AVSD)Atypical Hemolytic Uremic Syndrome (aHUS)Atypical Mole SyndromeAutoimmune Polyendocrine SyndromeAutoimmune ThyroiditisBaller Gerold Syndrome (BGS)Balo DiseaseBannayan Riley Ruvalcaba Syndrome (BRRS)Banti’s SyndromeBardet Biedl SyndromeBarrett EsophagusBarth Syndrome (BTHS)Bartter’s SyndromeBatten Disease (NCL)Beals Syndrome (CCA)Becker Muscular Dystrophy (BMD)Beckwith Wiedemann Syndrome (BWS)Behcet’s Syndrome (BD)Bell’s PalsyBenign Essential Blepharospasm (BEB)Benign Paroxysmal Positional Vertigo (BPPV)Bernard Soulier Syndrome (BSS)Berylliosis (CBD)Best DiseaseBethlem MyopathyBilateral Renal AgenesisBinder SyndromeBinswanger’s DiseaseBjornstad SyndromeBlackfan Diamond Anemia (BDA)Bladder Exstrophy-Epispadias-Cloacal Exstrophy Complex (BEEC)BlastomycosisBloom Syndrome (Bs)Blue Diaper SyndromeBlue Rubber Bleb Nevus Syndrome (BRBNS)Borjeson-Forssman-Lehman Syndrome (BFLS)Bowen Hutterite SyndromeBowen’s Disease (BD)Brachial Plexus PalsyBranchio Oculo Facial Syndrome (BOFS)Branchio Oto Renal Syndrome (BOR)Bronchiolitis Obliterans Organizing Pneumonia (BOOP)Bronchopulmonary Dysplasia (BPD)Brown Sequard Syndrome (BSS)Brown SyndromeBrugada SyndromeBudd Chiari SyndromeBuerger’s DiseaseBullous PemphigoidBurning Mouth Syndrome (BMS)Campomelic SyndromeCamurati-Engelmann Disease (CED)Canavan DiseaseCarbamyl Phosphate Synthetase DeficiencyCarcinoid SyndromeCardiofaciocutaneous Syndrome (CFC)Carnitine Deficiency SyndromeCarnitine Palmitoyltransferase 1A DeficiencyCarnosinemiaCaroli DiseaseCarpenter SyndromeCastleman’s DiseaseCat Eye Syndrome (CES)Catel Manzke SyndromeCaudal Regression SyndromeCayler SyndromeCeliac DiseaseCentral Core Disease (CCD)Cerebellar AgenesisCerebral Cavernous Malformation (CCM)Cerebral Palsy (CP)Cerebro Oculo Facio Skeletal Syndrome (COFS)Cerebrocostomandibular Syndrome (CCMS)Cerebrotendinous Xanthomatosus (CTX)Chagas DiseaseChanarin Dorfman Syndrome (CDS)Chandler’s SyndromeCharcot Marie Tooth DiseaseCHARGE SyndromeChediak Higashi SyndromeChiari Frommel SyndromeCHILD SyndromeCholinergic UrticariaChordomaChorea Acanthocytosis (ChAc)Choroideremia (CHM)Chromosome 14 RingChromosome 15 RingChromosome 18 RingChromosome 18q- SyndromeChromosome 21 RingChromosome 22 RingChromosome 4 RingChromosome 6 RingChromosome 9 RingChronic Fatigue Syndrome (CFS)Chronic Fatigue SyndromeChronic Granulomatous Disease (CGD)Chronic Inflammatory Demyelinating Polyneuropathy (CIPD)Chronic Lymphocytic Leukemia (CLL)Chronic Myelogenous Leukemia (CML)Chronic PancreatitisChurg Strauss Syndrome (CSS)CitrullinemiaCleft Palate and Cleft LipCleidocranial DysplasiaClubfootCluster HeadacheCoats’ DiseaseCockayne Syndrome (CS)Coffin Lowry Syndrome (CLS)Coffin Siris SyndromeCogan Reese SyndromeCogan Type Ocular Motor ApraxiaCohen SyndromeCold UrticariaCollagenous ColitisCommon Variable Immune Deficiency (CVID)Complex Regional Pain Syndrome (CRPS)Cone DystrophyCongenital Adrenal Hyperplasia (CAH)Congenital AfibrinogenemiaCongenital Bilateral Perisylvian Syndrome (CBPS)Congenital Central Hypoventilation Syndrome (CCHS)Congenital Disorders of Glycosylation Syndrome (CDGS)Congenital Fiber Type Disproportion (CFTD)Congenital Fibrosis of the Extraocular Muscles (CFEOM)Congenital Generalized Fibromatosis (CGF)Congenital Heart BlockCongenital Hepatic Fibrosis (CHF)Congenital Hypomyelination Neuropathy (CHN)Congenital Lobar Emphysema (CLE)Congenital MyopathyCongenital RubellaCongenital Spondyloepiphyseal DysplasiaCongenital Varicella SyndromeConn SyndromeConradi Hunermann SyndromeConstitutional Growth Delay (CGD)Cor TriatriatumCorneal DystrophiesCornelia de Lange Syndrome (CDLS)Coronal Dentin DysplasiaCorticobasal DegenerationCostello SyndromeCowden Syndrome (CD)Craniofrontonasal DysplasiaCraniometaphyseal DysplasiaCreutzfeldt Jakob Disease (CJD)Cri du Chat SyndromeCrigler-Najjar Syndrome (CNS)Crohn’s DiseaseCronkhite-Canada Syndrome (CCS)Crouzon SyndromeCurth Macklin Type Ichthyosis HystrixCushing’s SyndromeCutaneous Necrotizing Vasculitis (CNV)Cutaneous T-Cell Lymphomas (CTCL)Cutis LaxaCutis Marmorata Telangiectatica Congenita (CMTC)Cyclic NeutropeniaCyclic Vomiting Syndrome (CVS)Cystic FibrosisCystic HygromaCysticercosisCystinosisCystinuriaCytochrome C Oxidase DeficiencyDandy Walker Malformation (DWM)Danon DiseaseDe Barsy SyndromeDe Santis Cacchione SyndromeDegos DiseaseDejerine Sottas DiseaseDentinogenesis Imperfecta (DGI)Denys-Drash Syndrome (DDS)Dercum DiseaseDermatitis HerpetiformisDermatomyositisDiabetic RetinopathyDiastrophic DysplasiaDiencephalic SyndromeDiffuse Idiopathic Skeletal Hyperostosis (DISH)DiGeorge Syndrome (DGS)Disaccharide Intolerance I (CSID)Distal Trisomy 10qDistal Trisomy 15qDiverticulitisDOOR SyndromeDowling-Degos diseaseDown SyndromeDuane Syndrome (DS)Dubin Johnson Syndrome (DJS)Dubowitz SyndromeDuchenne Muscular Dystrophy (DMD)Duodenal AtresiaDupuytren’s ContractureDyggve Melchior Clausen Syndrome (DMC)DyschondrosteosisDyskeratosis Congenita (DC)DystoniaEales DiseaseEctodermal DysplasiasEctrodactyly Ectodermal Dysplasia Cleft Lip/Palate (EEC)Ehlers Danlos Syndrome (EDS)Eisenmenger SyndromeEllis Van Creveld Syndrome (EVC)Erythrokeratodermia Progressiva Symmetrica Ichthyosis (PSEK)Esophageal Atresia (EA)Essential Tremor (ET)Fibromyalgia (FM)Friedreich’s Ataxia (FA)GastroparesisGlucose-6-Phosphate Dehydrogenase Deficiency (G6PD)Glutaric AcidemiaGlutaric AciduriaGlycogen Storage Disease (GSD)Haim-Munk Syndrome (HMS)Hereditary Coproporphyria (HCP)Human Granulocytic Ehrlichiosis (HGE)Human Monocytic Ehrlichiosis (HME)HyperoxaluriaHypomelanosis of ItoIdiopathic Dilatation of the Pulmonary Artery (IDPA)Ivemark SyndromeKearns Sayre Syndrome (KSS)Keratosis Follicularis Spinulosa Decalvans Ichthyosis (KFSD)Landau Kleffner Syndrome (LKS)Langerhans Cell Histiocytosis (LCH)Lhermitte-Duclos Disease (LDD)Medium Chain Acyl CoA Dehydrogenase Deficiency (MCADD)Medullary Cystic Kidney Disease (MCKD)Medullary Sponge Kidney (MSK)Membranoproliferative Glomerulonephritis (MPGN)Metatropic DysplasiaMixed Connective Tissue Disease (MCTD)Multiple Sulfatase Deficiency (MSD)Muscular Dystrophy (MD)Myofibrillar MyopathyNance-Horan Syndrome (NHS)Neonatal Alloimmune Thrombocytopenia (NAIT)Neurodegeneration with Brain Iron Accumulation (NBIA)Neurofibromatosis (NF)Neuromyelitis OpticaOptic Nerve Hypoplasia (ONH)Otopalatodigital Spectrum Disorders (OPD)Parkinson’s Disease (PD)PolymyositisProgressive Osseous Heteroplasia (POH)ProlactinomaPseudoxanthoma Elasticum (PXE)Pure Red Cell AplasiaRubinstein Taybi Syndrome (RTS)Short Chain Acyl CoA Dehydrogenase Deficiency (SCAD)Succinic Semialdehyde Dehydrogenase Deficiency (SSADHD)Temporomandibular Joint Dysfunction (TMJ)Thin Basement Membrane Nephropathy (TBMN)TrigonocephalyUllrich Disease (UCMD)Velo-Cardio-Facial Syndrome (VCFS)