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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 335 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 (335 communities, and more added each day!)
Aarskog Syndrome (AAS) • Aase Syndrome • Abetalipoproteinemia • Ablepharon Macrostomia Syndrome (AMS) • Achalasia • Achard Thiers Syndrome • Achondrogenesis • Achondroplasia • Acne Rosacea • Acoustic Neuroma • Acrodermatitis Enteropathica • Acrodysostosis • Acromegaly • Acromesomelic Dysplasia • Acromicric Dysplasia • ACTH Deficiency • Acute Intermittent Porphyria (AIP) • Acute Lymphocytic Leukemia (ALL) • Acute Myeloid Leukemia (AML) • Adams Oliver Syndrome (AOS) • Addison’s Disease • Adenoid Cystic Carcinoma (AdCC) • Adenylosuccinate Lyase Deficiency • Adie Syndrome • Adrenoleukodystrophy • Adult Polyglucosan Body Disease (APBD) • Agenesis of Corpus Callosum (ACC) • Ahumada-Del Castillo Syndrome • Aicardi Syndrome • ALA-D Porphyria • Alagille Syndrome • Albinism • Alexander Disease • Alkaptonuria • Allan Herndon Syndrome • Alopecia Areata (AA) • Alpers Disease • Alpha Thalassemia X-linked Mental Retardation Syndrome (ATR-X) • Alpha-1-Antitrypsin Deficiency (A1AD) • Alpha-Mannosidosis • Alport Syndrome • Alstrom Syndrome • Alternating Hemiplegia of Childhood (AHC) • Alveolar Capillary Dysplasia (ACD) • Alveolar Soft Part Sarcoma (ASPS) • Ameloblastoma • Amelogenesis Imperfecta • Amniotic Band Syndrome (ABS) • Amyloidosis • Amyotrophic Lateral Sclerosis (ALS) • Anencephaly • Angelman Syndrome • Angioimmunoblastic with Dysproteinemia Lymphadenopathy (AILD) • Aniridia • Ankylosing Spondylitis (AS) • Anodontia • Antiphospholipid Syndrome (APS) • Antithrombin deficiency • Antley Bixler Syndrome • APECED Syndrome • Apert Syndrome • Aplasia Cutis Congenita • Aplastic Anemia • Apraxia • Arachnoid Cysts • Arachnoiditis • Arginase Deficiency • Argininosuccinic Aciduria • Arnold-Chiari Malformation (ACM) • Arterial Tortuosity Syndrome (ATS) • Arteriosclerotic Retinopathy • Arthrogryposis Multiplex Congenita (AMC) • Asherman’s Syndrome (AS) • Aspartylglycosaminuria (AGU) • Aspergillosis • Asphyxiating Thoracic Dystrophy (ATD) • Astrocytoma • Ataxia 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 Syndrome • Autoimmune Polyendocrine Syndrome • Autoimmune Thyroiditis • Baller Gerold Syndrome (BGS) • Balo Disease • Bannayan Riley Ruvalcaba Syndrome (BRRS) • Banti’s Syndrome • Bardet Biedl Syndrome • Barrett Esophagus • Barth Syndrome (BTHS) • Bartter’s Syndrome • Batten Disease (NCL) • Beals Syndrome (CCA) • Becker Muscular Dystrophy (BMD) • Beckwith Wiedemann Syndrome (BWS) • Behcet’s Syndrome (BD) • Bell’s Palsy • Benign Essential Blepharospasm (BEB) • Benign Paroxysmal Positional Vertigo (BPPV) • Bernard Soulier Syndrome (BSS) • Berylliosis (CBD) • Best Disease • Bethlem Myopathy • Bilateral Renal Agenesis • Binder Syndrome • Binswanger’s Disease • Bjornstad Syndrome • Blackfan Diamond Anemia (BDA) • Bladder Exstrophy-Epispadias-Cloacal Exstrophy Complex (BEEC) • Blastomycosis • Bloom Syndrome (Bs) • Blue Diaper Syndrome • Blue Rubber Bleb Nevus Syndrome (BRBNS) • Borjeson-Forssman-Lehman Syndrome (BFLS) • Bowen Hutterite Syndrome • Bowen’s Disease (BD) • Brachial Plexus Palsy • Branchio Oculo Facial Syndrome (BOFS) • Branchio Oto Renal Syndrome (BOR) • Bronchiolitis Obliterans Organizing Pneumonia (BOOP) • Bronchopulmonary Dysplasia (BPD) • Brown Sequard Syndrome (BSS) • Brown Syndrome • Brugada Syndrome • Budd Chiari Syndrome • Buerger’s Disease • Bullous Pemphigoid • Burning Mouth Syndrome (BMS) • Campomelic Syndrome • Camurati-Engelmann Disease (CED) • Canavan Disease • Carbamyl Phosphate Synthetase Deficiency • Carcinoid Syndrome • Cardiofaciocutaneous Syndrome (CFC) • Carnitine Deficiency Syndrome • Carnitine Palmitoyltransferase 1A Deficiency • Carnosinemia • Caroli Disease • Carpenter Syndrome • Castleman’s Disease • Cat Eye Syndrome (CES) • Catel Manzke Syndrome • Caudal Regression Syndrome • Cayler Syndrome • Celiac Disease • Central Core Disease (CCD) • Cerebellar Agenesis • Cerebral Cavernous Malformation (CCM) • Cerebral Palsy (CP) • Cerebro Oculo Facio Skeletal Syndrome (COFS) • Cerebrocostomandibular Syndrome (CCMS) • Cerebrotendinous Xanthomatosus (CTX) • Chagas Disease • Chanarin Dorfman Syndrome (CDS) • Chandler’s Syndrome • Charcot Marie Tooth Disease • CHARGE Syndrome • Chediak Higashi Syndrome • Chiari Frommel Syndrome • CHILD Syndrome • Cholinergic Urticaria • Chordoma • Chorea Acanthocytosis (ChAc) • Choroideremia (CHM) • Chromosome 14 Ring • Chromosome 15 Ring • Chromosome 18 Ring • Chromosome 18q- Syndrome • Chromosome 21 Ring • Chromosome 22 Ring • Chromosome 4 Ring • Chromosome 6 Ring • Chromosome 9 Ring • Chronic Fatigue Syndrome (CFS) • Chronic Fatigue Syndrome • Chronic Granulomatous Disease (CGD) • Chronic Inflammatory Demyelinating Polyneuropathy (CIPD) • Chronic Lymphocytic Leukemia (CLL) • Chronic Myelogenous Leukemia (CML) • Chronic Pancreatitis • Churg Strauss Syndrome (CSS) • Citrullinemia • Cleft Palate and Cleft Lip • Cleidocranial Dysplasia • Clubfoot • Cluster Headache • Coats’ Disease • Cockayne Syndrome (CS) • Coffin Lowry Syndrome (CLS) • Coffin Siris Syndrome • Cogan Reese Syndrome • Cogan Type Ocular Motor Apraxia • Cohen Syndrome • Cold Urticaria • Collagenous Colitis • Common Variable Immune Deficiency (CVID) • Complex Regional Pain Syndrome (CRPS) • Cone Dystrophy • Congenital Adrenal Hyperplasia (CAH) • Congenital Afibrinogenemia • Congenital 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 Block • Congenital Hepatic Fibrosis (CHF) • Congenital Hypomyelination Neuropathy (CHN) • Congenital Lobar Emphysema (CLE) • Congenital Myopathy • Congenital Rubella • Congenital Spondyloepiphyseal Dysplasia • Congenital Varicella Syndrome • Conn Syndrome • Conradi Hunermann Syndrome • Constitutional Growth Delay (CGD) • Cor Triatriatum • Corneal Dystrophies • Cornelia de Lange Syndrome (CDLS) • Coronal Dentin Dysplasia • Corticobasal Degeneration • Costello Syndrome • Cowden Syndrome (CD) • Craniofrontonasal Dysplasia • Craniometaphyseal Dysplasia • Creutzfeldt Jakob Disease (CJD) • Cri du Chat Syndrome • Crigler-Najjar Syndrome (CNS) • Crohn’s Disease • Cronkhite-Canada Syndrome (CCS) • Crouzon Syndrome • Curth Macklin Type Ichthyosis Hystrix • Cushing’s Syndrome • Cutaneous Necrotizing Vasculitis (CNV) • Cutaneous T-Cell Lymphomas (CTCL) • Cutis Laxa • Cutis Marmorata Telangiectatica Congenita (CMTC) • Cyclic Neutropenia • Cyclic Vomiting Syndrome (CVS) • Cystic Fibrosis • Cystic Hygroma • Cysticercosis • Cystinosis • Cystinuria • Cytochrome C Oxidase Deficiency • Dandy Walker Malformation (DWM) • Danon Disease • De Barsy Syndrome • De Santis Cacchione Syndrome • Degos Disease • Dejerine Sottas Disease • Dentinogenesis Imperfecta (DGI) • Denys-Drash Syndrome (DDS) • Dercum Disease • Dermatitis Herpetiformis • Dermatomyositis • Diabetic Retinopathy • Diastrophic Dysplasia • Diencephalic Syndrome • Diffuse Idiopathic Skeletal Hyperostosis (DISH) • DiGeorge Syndrome (DGS) • Disaccharide Intolerance I (CSID) • Distal Trisomy 10q • Distal Trisomy 15q • Diverticulitis • DOOR Syndrome • Dowling-Degos disease • Down Syndrome • Duane Syndrome (DS) • Dubin Johnson Syndrome (DJS) • Dubowitz Syndrome • Duchenne Muscular Dystrophy (DMD) • Duodenal Atresia • Dupuytren’s Contracture • Dyggve Melchior Clausen Syndrome (DMC) • Dyschondrosteosis • Dyskeratosis Congenita (DC) • Ectrodactyly Ectodermal Dysplasia Cleft Lip/Palate (EEC) • Ehlers Danlos Syndrome (EDS) • Erythrokeratodermia Progressiva Symmetrica Ichthyosis (PSEK) • Esophageal Atresia (EA) • Essential Tremor (ET) • Fibromyalgia (FM) • Friedreich’s Ataxia (FA) • Gastroparesis • Glucose-6-Phosphate Dehydrogenase Deficiency (G6PD) • Glutaric Acidemia • Glutaric Aciduria • Glycogen Storage Disease (GSD) • Haim-Munk Syndrome (HMS) • Hereditary Coproporphyria (HCP) • Human Granulocytic Ehrlichiosis (HGE) • Human Monocytic Ehrlichiosis (HME) • Hyperoxaluria • Hypomelanosis of Ito • Idiopathic Dilatation of the Pulmonary Artery (IDPA) • Ivemark Syndrome • Kearns 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 Dysplasia • Mixed Connective Tissue Disease (MCTD) • Myofibrillar Myopathy • Nance-Horan Syndrome (NHS) • Neonatal Alloimmune Thrombocytopenia (NAIT) • Neurodegeneration with Brain Iron Accumulation (NBIA) • Neurofibromatosis (NF) • Neuromyelitis Optica • Optic Nerve Hypoplasia (ONH) • Otopalatodigital Spectrum Disorders (OPD) • Parkinson’s Disease (PD) • Polymyositis • Progressive Osseous Heteroplasia (POH) • Prolactinoma • Pseudoxanthoma Elasticum (PXE) • Pure Red Cell Aplasia • Rubinstein Taybi Syndrome (RTS) • Short Chain Acyl CoA Dehydrogenase Deficiency (SCAD) • Succinic Semialdehyde Dehydrogenase Deficiency (SSADHD) • Temporomandibular Joint Dysfunction (TMJ) • Thin Basement Membrane Nephropathy (TBMN) • Trigonocephaly • Ullrich Disease (UCMD) • Velo-Cardio-Facial Syndrome (VCFS) •