PCORnet is the nation’s Patient-Centered Clinical Research Network.   Patients may have an interest in learning more about the Patient-Powered Research Networks (PPRNs), especially if they have a condition that one or the PPRNs will be focusing on.  Click on a condition name below to learn about the PPRN serving that condition.

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Adrenoleukodystrophy Adult congenital heart disease Aicardi syndrome Alpha-1 antitrypsin deficiency (Alpha-1) ANCA-associated vasculitis Angelman syndrome Ankylosing spondylitis Arthritis Atrial fibrillationBatten disease Becker muscular dystrophy Behçet’s disease Bipolar disorder Breast cancer BRCA 1/2 BronchiectasisCDKL5 disorder Central nervous system (CNS) vasculitis Chronic bronchitis Chronic obstructive pulmonary disease Churg-Strauss syndrome (CSS) Cogan’s syndrome Cogan-type oculomotor apraxia Congenital bilateral perisylvian syndrome (CBPS) Continuous spike and wave of slow sleep (CSWSS) Crohn’s disease (adult) Crohn’s disease (pediatric) Cryoglobulinemic vasculitis Dekaban-Arima syndrome Depression Doose syndrome (Myoclonic-astatic epilepsy) Down syndrome (pediatric, with seizures) Dravet syndrome Duchenne muscular dystrophy Dup15q syndrome Dyskeratosis congenita Early myoclonic encephalophathy Electrical status epilepticus of slow sleep (ESES) Emphysema Eosinophilic granulomatosis with polyangiitis (EGPA) Familial pulmonary fibrosis Focal segmental glomerulosclerosis (FSGS) Giant cell arteritis (GCA) Glut1 deficiency Granulomatosis with polyangiitis (GPA, Wegener’s) Heart disease Henoch-Schonlein purpura (HSP, IgA vasculitis) Hepatitis High blood pressure High cholesterol Holoprosencephaly Hypocomplementemic vasculitis Hypothalamic hamartoma Infantile spasms/West syndrome Inflammatory bowel disease (adult) Inflammatory bowel disease (pediatric) Inherited bone marrow failure Jeavons syndrome Joubert syndrome Juvenile nephronophthisis KCNQ2 mutation

Landau-Kleffner syndrome Large vessel vasculitis Lennox-Gastaut syndrome Lissencephaly LupusMeckel-Gruber syndrome Membranous nephropathy (MN) Microscopic polyangiitis (MPA) Minimal change disease (MCD) Mitochondrial disorder (Alper’s Disease, Leigh’s Disease) Multiple sclerosis Musculoskeletal disorders Myoclonus epilepsy with ragged-red fibers (MERRF)Nephrotic syndrome Neurofibromatosis type 1 Neuronal ceroid lipofuscinoses (NCL) Ohtahara syndrome Osteoporosis Ovarian cancer PCDH19 female epilepsy Phelan-McDermid syndrome Polyarteritis nodosa (PAN) Prader-Willi syndrome Progressive myoclonic epilepsy (PME) Primary immunodeficiency diseases Primary nephrotic syndrome Pseudoxanthoma elasticum (PXE) Psoriasis Psoriatic arthritis RAS pathway disorders Rasmussen’s encephalopathy Refractory (non-reversible) asthma Rett’s syndrome Ring 14 syndrome Ring 20 syndrome Rheumatoid arthritis Scleroderma SCN2A mutation SCN8A mutation Senior-Loken syndrome Severe epilepsy with multiple independent spike foci (SE-MISF) SLC13A5 mutation Sleep apnea Spondyloarthritis Sudden arrhythmia death syndrome (SADS) Stroke Sturge-Weber syndrome SYNGAP1 mutation Takayasu’s arteritis (TAK) Telomere biology disorder/syndrome Temporal arteritis Tuberous sclerosis complex Ulcerative colitis (adult) Ulcerative colitis (pediatric) Unverricht-Lundborg syndrome Urticarial vasculitis Varadi-Papp syndrome Vasculitis Wegener’s granulomatosis

Don’t see your condition here? Check http://www.diseaseinfosearch.org for support and disease information.