Epilepsie Bundes-Elternverband e.V. (e.b.e.)
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Description of patient organisation
            Epilepsie ist eine der häufigsten chronischen Erkrankungen des Kindesalters. Durch die Diagnose „Epilepsie“ wird die Lebenssituation der Familie dramatisch verändert. Ziel der Arbeit des Epilepsie Bundes-Elternverbands e.V. (e.b.e.) ist es, die Kompetenz der Eltern zu stärken und Sicherheit im Umgang mit der Erkrankung zu geben. Die Kinder sollen eine Förderung erhalten, die ihren Fähigkeiten entspricht, um eine freie Entfaltung der Persönlichkeit zu ermöglichen. Dies erreicht der Verein durch Aufklärung, Abbau von Vorurteilen und Angebot von Entlastungsmöglichkeiten. 
Der e.b.e. ist ein bundesweiter Dachverband für Gruppierungen von Eltern epilepsiekranker Kinder und Jugendlicher. In der Organisationsstruktur wird die epileptologische Fachlichkeit gewährleistet. Zur Kommunikation dient die Verbandszeitung „epikurier“. Der Verein finanziert sich über Mitgliedsbeiträge, Krankenkassenförderung und Spenden.
Der e.b.e. ist ein bundesweiter Dachverband für Gruppierungen von Eltern epilepsiekranker Kinder und Jugendlicher. In der Organisationsstruktur wird die epileptologische Fachlichkeit gewährleistet. Zur Kommunikation dient die Verbandszeitung „epikurier“. Der Verein finanziert sich über Mitgliedsbeiträge, Krankenkassenförderung und Spenden.
Care provisions
This support group organisation offers the following
- Regular meetings
- Regional associations / regional representatives
- Newsletter / Association journal
Special offers
Regionale Epilepsie-Beratungsstellen.Contact
             0800 4422744
            
            
                    kontakt@epilepsie-elternverband.de
            
            
             Website
        
http://www.epilepsie-elternverband.de
Preview of the represented diseases 1
                    
                        
                        
                        Benign focal seizures of adolescence
                        
                    
                        
                        
                        Acute encephalopathy with biphasic seizures and late reduced diffusion
                        
                    
                        
                        
                        Isolated focal cortical dysplasia
                        
                    
                        
                        
                        Unilateral polymicrogyria
                        
                    
                        
                        
                        Rare epilepsy
                        
                    
                        
                        
                        CLN7 disease
                        
                    
                        
                        
                        Epileptic encephalopathy with global cerebral demyelination
                        
                    
                        
                        
                        Limbic encephalitis associated with antibodies to cell membrane antigens
                        
                    
                        
                        
                        CLN2 disease
                        
                    
                        
                        
                        Celiac disease-epilepsy-cerebral calcification syndrome
                        
                    
                        
                        
                        Isolated focal cortical dysplasia type II
                        
                    
                        
                        
                        Cerebral malformation with epilepsy
                        
                    
                        
                        
                        Mycoplasma encephalitis
                        
                    
                        
                        
                        Early-onset epileptic encephalopathy-cortical blindness-intellectual disability-facial dysmorphism syndrome
                        
                    
                        
                        
                        Myoclonic epilepsy of infancy
                        
                    
                        
                        
                        Thiamine-responsive encephalopathy
                        
                    
                        
                        
                        Startle epilepsy
                        
                    
                        
                        
                        X-linked dominant intellectual disability-epilepsy syndrome
                        
                    
                        
                        
                        Photosensitive epilepsy
                        
                    
                        
                        
                        Subacute sclerosing leukoencephalitis
                        
                    
                        
                        
                        La Crosse encephalitis
                        
                    
                        
                        
                        Central bilateral macrogyria
                        
                    
                        
                        
                        Early-onset epileptic encephalopathy and intellectual disability due to GRIN2A mutation
                        
                    
                        
                        
                        Focal epilepsy-intellectual disability-cerebro-cerebellar malformation
                        
                    
                        
                        
                        Oculocerebrocutaneous syndrome
                        
                    
                        
                        
                        Occipital pachygyria and polymicrogyria
                        
                    
                        
                        
                        Idiopathic hemiconvulsion-hemiplegia syndrome
                        
                    
                        
                        
                        Benign infantile focal epilepsy with midline spikes and waves during sleep
                        
                    
                        
                        
                        Dravet syndrome
                        
                    
                        
                        
                        Proteus syndrome
                        
                    
                        
                        
                        Posttransplant acute limbic encephalitis
                        
                    
                        
                        
                        Cortical dysgenesis with pontocerebellar hypoplasia due to TUBB3 mutation
                        
                    
                        
                        
                        Rett syndrome
                        
                    
                        
                        
                        Semilobar holoprosencephaly
                        
                    
                        
                        
                        Benign familial mesial temporal lobe epilepsy
                        
                    
                        
                        
                        DEND syndrome
                        
                    
                        
                        
                        Partial corpus callosum agenesis-cerebellar vermis hypoplasia with posterior fossa cysts syndrome
                        
                    
                        
                        
                        Benign infantile seizures associated with mild gastroenteritis
                        
                    
                        
                        
                        Generalized epilepsy-paroxysmal dyskinesia syndrome
                        
                    
                        
                        
                        Non-paraneoplastic limbic encephalitis
                        
                    
                        
                        
                        Epilepsy with myoclonic absences
                        
                    
                        
                        
                        Progressive myoclonic epilepsy type 5
                        
                    
                        
                        
                        Ring chromosome 20 syndrome
                        
                    
                        
                        
                        Action myoclonus-renal failure syndrome
                        
                    
                        
                        
                        Idiopathic or cryptogenic familial epilepsy syndrome with identified loci/genes
                        
                    
                        
                        
                        Thinking seizures
                        
                    
                        
                        
                        Lennox-Gastaut syndrome
                        
                    
                        
                        
                        Hyper-beta-alaninemia
                        
                    
                        
                        
                        Neuroectodermal melanolysosomal disease
                        
                    
                        
                        
                        Infantile epileptic-dyskinetic encephalopathy
                        
                    
                        
                        
                        Bilateral polymicrogyria
                        
                    
                        
                        
                        Acute encephalopathy with inflammation-mediated status epilepticus
                        
                    
                        
                        
                        CLN6 disease
                        
                    
                        
                        
                        X-linked intellectual disability-epilepsy syndrome
                        
                    
                        
                        
                        X-linked intellectual disability, Hedera type
                        
                    
                        
                        
                        CNTNAP2-related developmental and epileptic encephalopathy
                        
                    
                        
                        
                        Morvan syndrome
                        
                    
                        
                        
                        St. Louis encephalitis
                        
                    
                        
                        
                        17q11 microdeletion syndrome
                        
                    
                        
                        
                        OBSOLETE: CLN3 disease
                        
                    
                        
                        
                        CLN1 disease
                        
                    
                        
                        
                        Holoprosencephaly
                        
                    
                        
                        
                        Benign idiopathic neonatal seizures
                        
                    
                        
                        
                        Familial infantile myoclonic epilepsy
                        
                    
                        
                        
                        Benign partial infantile seizures
                        
                    
                        
                        
                        Unilateral focal polymicrogyria
                        
                    
                        
                        
                        Japanese encephalitis
                        
                    
                        
                        
                        Limbic encephalitis with LGI1 antibodies
                        
                    
                        
                        
                        Non-syndromic cerebral malformation due to abnormal neuronal migration
                        
                    
                        
                        
                        15q13.3 microdeletion syndrome
                        
                    
                        
                        
                        Juvenile absence epilepsy
                        
                    
                        
                        
                        X-linked epilepsy-learning disabilities-behavior disorders syndrome
                        
                    
                        
                        
                        Schizencephaly
                        
                    
                        
                        
                        Febrile infection-related epilepsy syndrome
                        
                    
                        
                        
                        Subependymal nodular heterotopia
                        
                    
                        
                        
                        Rolandic epilepsy-speech dyspraxia syndrome
                        
                    
                        
                        
                        Neurocutaneous syndrome with epilepsy
                        
                    
                        
                        
                        Perioral myoclonia with absences
                        
                    
                        
                        
                        Audiogenic seizures
                        
                    
                        
                        
                        Benign non-familial infantile seizures
                        
                    
                        
                        
                        Hemimegalencephaly
                        
                    
                        
                        
                        Channelopathy with epilepsy
                        
                    
                        
                        
                        Limbic encephalitis
                        
                    
                        
                        
                        Myoclonic-astatic epilepsy
                        
                    
                        
                        
                        Myoclonic epilepsy in non-progressive encephalopathies
                        
                    
                        
                        
                        Infantile-onset mesial temporal lobe epilepsy with severe cognitive regression
                        
                    
                        
                        
                        Infantile convulsions and choreoathetosis
                        
                    
                        
                        
                        Autosomal dominant epilepsy with auditory features
                        
                    
                        
                        
                        Sub-cortical nodular heterotopia
                        
                    
                        
                        
                        Atherosclerosis-deafness-diabetes-epilepsy-nephropathy syndrome
                        
                    
                        
                        
                        Benign familial neonatal-infantile seizures
                        
                    
                        
                        
                        Intermediate DEND syndrome
                        
                    
                        
                        
                        Aicardi syndrome
                        
                    
                        
                        
                        Autosomal recessive cerebellar ataxia-epilepsy-intellectual disability syndrome due to RUBCN deficiency
                        
                    
                        
                        
                        KDM5C-related syndromic X-linked intellectual disability
                        
                    
                        
                        
                        Benign childhood occipital epilepsy, Gastaut type
                        
                    
                        
                        
                        Autism-epilepsy syndrome due to branched chain ketoacid dehydrogenase kinase deficiency
                        
                    
                        
                        
                        Neurofibromatosis type 1 due to NF1 mutation or intragenic deletion
                        
                    
                        
                        
                        Epilepsy syndrome
                        
                    
                        
                        
                        Benign familial infantile epilepsy
                        
                    
                        
                        
                        Progressive myoclonic epilepsy type 6
                        
                    
                        
                        
                        Autosomal recessive frontotemporal pachygyria
                        
                    
                        
                        
                        Hot water reflex epilepsy
                        
                    
                        
                        
                        Late infantile neuronal ceroid lipofuscinosis
                        
                    
                        
                        
                        ARX-related epileptic encephalopathy
                        
                    
                        
                        
                        Early-onset progressive encephalopathy with migrant continuous myoclonus
                        
                    
                        
                        
                        NMDA receptor encephalitis
                        
                    
                        
                        
                        Sturge-Weber syndrome
                        
                    
                        
                        
                        Moynahan syndrome
                        
                    
                        
                        
                        Autosomal recessive cerebellar ataxia-epilepsy-intellectual disability syndrome
                        
                    
                        
                        
                        Metabolic diseases with epilepsy
                        
                    
                        
                        
                        Benign childhood occipital epilepsy, Panayiotopoulos type
                        
                    
                        
                        
                        Isolated focal cortical dysplasia type I
                        
                    
                        
                        
                        Micturation-induced seizures
                        
                    
                        
                        
                        Congenital rubella syndrome
                        
                    
                        
                        
                        Juvenile myoclonic epilepsy
                        
                    
                        
                        
                        Non-herpetic acute limbic encephalitis
                        
                    
                        
                        
                        Septopreoptic holoprosencephaly
                        
                    
                        
                        
                        Mesial temporal lobe epilepsy with hippocampal sclerosis
                        
                    
                        
                        
                        Nodular neuronal heterotopia
                        
                    
                        
                        
                        Eating reflex epilepsy
                        
                    
                        
                        
                        Landau-Kleffner syndrome
                        
                    
                        
                        
                        Autosomal dominant nocturnal frontal lobe epilepsy
                        
                    
                        
                        
                        PEHO-like syndrome
                        
                    
                        
                        
                        Progressive myoclonic epilepsy type 1
                        
                    
                        
                        
                        Rolandic epilepsy
                        
                    
                        
                        
                        Western equine encephalitis
                        
                    
                        
                        
                        New-onset refractory status epilepticus
                        
                    
                        
                        
                        Benign partial epilepsy of infancy with complex partial seizures
                        
                    
                        
                        
                        Solitary median maxillary central incisor syndrome
                        
                    
                        
                        
                        Paraneoplastic limbic encephalitis
                        
                    
                        
                        
                        Lissencephaly
                        
                    
                        
                        
                        Infantile spasms-broad thumbs syndrome
                        
                    
                        
                        
                        Infantile neuronal ceroid lipofuscinosis
                        
                    
                        
                        
                        Chromosomal anomaly with epilepsy as a major feature
                        
                    
                        
                        
                        Alobar holoprosencephaly
                        
                    
                        
                        
                        Corpus callosum agenesis-abnormal genitalia syndrome
                        
                    
                        
                        
                        Limbic encephalitis with DPP6 antibodies
                        
                    
                        
                        
                        Pachygyria-intellectual disability-epilepsy syndrome
                        
                    
                        
                        
                        Cryptogenic late-onset epileptic spasms
                        
                    
                        
                        
                        Familial partial epilepsy
                        
                    
                        
                        
                        Familial mesial temporal lobe epilepsy with febrile seizures
                        
                    
                        
                        
                        Benign adult familial myoclonic epilepsy
                        
                    
                        
                        
                        Rasmussen subacute encephalitis
                        
                    
                        
                        
                        CLN4A disease
                        
                    
                        
                        
                        Cerebral cortical dysplasia
                        
                    
                        
                        
                        CLN9 disease
                        
                    
                        
                        
                        Familial encephalopathy with neuroserpin inclusion bodies
                        
                    
                        
                        
                        Epilepsy with eyelid myoclonia
                        
                    
                        
                        
                        Cerebral diseases of vascular origin with epilepsy
                        
                    
                        
                        
                        Lobar holoprosencephaly
                        
                    
                        
                        
                        Adult neuronal ceroid lipofuscinosis
                        
                    
                        
                        
                        Bilateral frontal polymicrogyria
                        
                    
                        
                        
                        Benign occipital epilepsy
                        
                    
                        
                        
                        Reflex epilepsy
                        
                    
                        
                        
                        Reading seizures
                        
                    
                        
                        
                        Klüver-Bucy syndrome
                        
                    
                        
                        
                        West-Nile encephalitis
                        
                    
                        
                        
                        Colorado tick fever
                        
                    
                        
                        
                        Herpes simplex virus encephalitis
                        
                    
                        
                        
                        Progressive hemifacial atrophy
                        
                    
                        
                        
                        Acquired porencephaly
                        
                    
                        
                        
                        Unilateral hemispheric polymicrogyria
                        
                    
                        
                        
                        Progressive epilepsy-intellectual disability syndrome, Finnish type
                        
                    
                        
                        
                        Infantile epilepsy syndrome
                        
                    
                        
                        
                        Incontinentia pigmenti
                        
                    
                        
                        
                        Neonatal epilepsy syndrome
                        
                    
                        
                        
                        Tuberous sclerosis complex
                        
                    
                        
                        
                        X-linked spasticity-intellectual disability-epilepsy syndrome
                        
                    
                        
                        
                        Familial focal epilepsy with variable foci
                        
                    
                        
                        
                        Malignant migrating focal seizures of infancy
                        
                    
                        
                        
                        Inflammatory and autoimmune disease with epilepsy
                        
                    
                        
                        
                        Midline interhemispheric variant of holoprosencephaly
                        
                    
                        
                        
                        Fetal cytomegalovirus syndrome
                        
                    
                        
                        
                        Progressive myoclonic epilepsy with dystonia
                        
                    
                        
                        
                        Autosomal recessive cerebellar ataxia-epilepsy-intellectual disability syndrome due to WWOX deficiency
                        
                    
                        
                        
                        Bilateral parasagittal parieto-occipital polymicrogyria
                        
                    
                        
                        
                        CLN8 disease
                        
                    
                        
                        
                        Bilateral frontoparietal polymicrogyria
                        
                    
                        
                        
                        CLN10 disease
                        
                    
                        
                        
                        Eastern equine encephalitis
                        
                    
                        
                        
                        CLN11 disease
                        
                    
                        
                        
                        Autosomal recessive cerebellar ataxia-epilepsy-intellectual disability syndrome due to TUD deficiency
                        
                    
                        
                        
                        Juvenile neuronal ceroid lipofuscinosis
                        
                    
                        
                        
                        Generalized epilepsy with febrile seizures-plus
                        
                    
                        
                        
                        Hereditary neurocutaneous malformation
                        
                    
                        
                        
                        Microlissencephaly-micromelia syndrome
                        
                    
                        
                        
                        Familial temporal lobe epilepsy
                        
                    
                        
                        
                        Benign familial neonatal epilepsy
                        
                    
                        
                        
                        MERRF
                        
                    
                        
                        
                        Diffuse cerebral and cerebellar atrophy-intractable seizures-progressive microcephaly syndrome
                        
                    
                        
                        
                        Primary microcephaly-epilepsy-permanent neonatal diabetes syndrome
                        
                    
                        
                        
                        Neurofibromatosis type 1
                        
                    
                        
                        
                        Adolescent-onset epilepsy syndrome
                        
                    
                        
                        
                        Microform holoprosencephaly
                        
                    
                        
                        
                        Female restricted epilepsy with intellectual disability
                        
                    
                        
                        
                        Congenital toxoplasmosis
                        
                    
                        
                        
                        PEHO syndrome
                        
                    
                        
                        
                        Infectious disease with epilepsy
                        
                    
                        
                        
                        Partington syndrome
                        
                    
                        
                        
                        Constitutional megaloblastic anemia with severe neurologic disease
                        
                    
                        
                        
                        Severe neonatal-onset encephalopathy with microcephaly
                        
                    
                        
                        
                        Lafora disease
                        
                    
                        
                        
                        Hyperekplexia-epilepsy syndrome
                        
                    
                        
                        
                        Progressive myoclonic epilepsy type 3
                        
                    
                        
                        
                        Childhood absence epilepsy
                        
                    
                        
                        
                        CLN13 disease
                        
                    
                        
                        
                        Childhood-onset epilepsy syndrome
                        
                    
                        
                        
                        Early-onset Lafora body disease
                        
                    
                        
                        
                        Bilateral perisylvian polymicrogyria
                        
                    
                        
                        
                        Acute disseminated encephalomyelitis
                        
                    
                        
                        
                        Congenital neuronal ceroid lipofuscinosis
                        
                    
                        
                        
                        Familial porencephaly
                        
                    
                        
                        
                        Infantile spasms syndrome
                        
                    
                        
                        
                        Tick-borne encephalitis
                        
                    
                        
                        
                        Early infantile epileptic encephalopathy
                        
                    
                        
                        
                        Epilepsy-telangiectasia syndrome
                        
                    
                        
                        
                        Meningococcal meningitis
                        
                    
                        
                        
                        Porencephaly
                        
                    
                        
                        
                        W syndrome
                        
                    
                        
                        
                        Encephalitis lethargica
                        
                    
                        
                        
                        Ring chromosome 14 syndrome
                        
                    
                        
                        
                        CLN5 disease
                        
                    
                        
                        
                        Subcortical band heterotopia
                        
                    
                        
                        
                        CLN4B disease
                        
                    
                        
                        
                        Polymicrogyria
                        
                    
                        
                        
                        Bilateral generalized polymicrogyria
                        
                    
                        
                        
                        Pneumococcal meningitis
                        
                    
                        
                        
                        Limbic encephalitis with nCMAgs antibodies
                        
                    
                        
                        
                        EAST syndrome
                        
                    
                        
                        
                        Hypothalamic hamartomas with gelastic seizures
                        
                    
                        
                        
                        Early myoclonic encephalopathy
                        
                    
                        
                        
                        X-linked lissencephaly with abnormal genitalia
                        
                    
                        
                        
                        Progressive myoclonic epilepsy
                        
                    
                        
                        
                        Rolandic epilepsy-paroxysmal exercise-induced dystonia-writer's cramp syndrome
                        
                    
                        
                        
                        Periventricular nodular heterotopia
                        
                    
                        
                        
                        Ito hypomelanosis
                        
                    
                        
                        
                        Atypical Rett syndrome
                        
                    
                        
                        
                        Rubella panencephalitis
                        
                    
                        
                        
                        Kleefstra syndrome due to 9q34 microdeletion
                        
                    
                        
                        
                        Continuous spikes and waves during sleep
                        
                    
                        
                        
                        Monogenic disease with epilepsy
                        
                    
                        
                        
                        Benign partial epilepsy with secondarily generalized seizures in infancy
                        
                    
                        
                        
                        Orgasm-induced seizures
                        
                    
                        
                        
                        Limbic encephalitis with caspr2 antibodies
                        
                    
                        
                        
                        Classic paraneoplastic limbic encephalitis
                        
                    
                
            7.40831077102484551.47559738974708Epilepsie Bundes-Elternverband e.V. (e.b.e.)
            
        Last updated:
        23.10.2023