SE-ATLAS

Mapping of Health Care Providers
for People with Rare Diseases

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.

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

Address

Dopheidestr. 11 b
44227 Dortmund

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Preview of the represented diseases 1

Rare epilepsy Unilateral polymicrogyria Celiac disease-epilepsy-cerebral calcification syndrome Epileptic encephalopathy with global cerebral demyelination Startle epilepsy Cerebral malformation with epilepsy Thiamine-responsive encephalopathy Isolated focal cortical dysplasia type II Early-onset epileptic encephalopathy-cortical blindness-intellectual disability-facial dysmorphism syndrome Myoclonic epilepsy of infancy Oculocerebrocutaneous syndrome Focal epilepsy-intellectual disability-cerebro-cerebellar malformation Central bilateral macrogyria Early-onset epileptic encephalopathy and intellectual disability due to GRIN2A mutation Proteus syndrome Idiopathic hemiconvulsion-hemiplegia syndrome Benign infantile focal epilepsy with midline spikes and waves during sleep Posttransplant acute limbic encephalitis Rett syndrome DEND syndrome Progressive myoclonic epilepsy type 5 Epilepsy with myoclonic absences Idiopathic or cryptogenic familial epilepsy syndrome with identified loci/genes Ring chromosome 20 syndrome Bilateral polymicrogyria Lennox-Gastaut syndrome Hyper-beta-alaninemia X-linked intellectual disability-epilepsy syndrome X-linked intellectual disability, Hedera type Holoprosencephaly Unilateral focal polymicrogyria Benign partial infantile seizures 15q13.3 microdeletion syndrome Non-syndromic cerebral malformation due to abnormal neuronal migration Juvenile absence epilepsy Subependymal nodular heterotopia X-linked epilepsy-learning disabilities-behavior disorders syndrome Febrile infection-related epilepsy syndrome Rolandic epilepsy-speech dyspraxia syndrome Neurocutaneous syndrome with epilepsy Benign non-familial infantile seizures Infantile-onset mesial temporal lobe epilepsy with severe cognitive regression Myoclonic-astatic epilepsy Hemimegalencephaly Aicardi syndrome Intermediate DEND syndrome Sub-cortical nodular heterotopia Autosomal dominant epilepsy with auditory features Infantile convulsions and choreoathetosis Hot water reflex epilepsy Epilepsy syndrome Autosomal recessive frontotemporal pachygyria Neurofibromatosis type 1 due to NF1 mutation or intragenic deletion Autism-epilepsy syndrome due to branched chain ketoacid dehydrogenase kinase deficiency KDM5C-related syndromic X-linked intellectual disability Benign familial infantile epilepsy ARX-related epileptic encephalopathy Early-onset progressive encephalopathy with migrant continuous myoclonus Moynahan syndrome Micturation-induced seizures Isolated focal cortical dysplasia type I Congenital rubella syndrome Juvenile myoclonic epilepsy Benign childhood occipital epilepsy, Panayiotopoulos type Septopreoptic holoprosencephaly Mesial temporal lobe epilepsy with hippocampal sclerosis Eating reflex epilepsy Progressive myoclonic epilepsy type 1 Lissencephaly Benign partial epilepsy of infancy with complex partial seizures Pachygyria-intellectual disability-epilepsy syndrome Corpus callosum agenesis-abnormal genitalia syndrome Benign adult familial myoclonic epilepsy Cryptogenic late-onset epileptic spasms Rasmussen subacute encephalitis Familial mesial temporal lobe epilepsy with febrile seizures Cerebral diseases of vascular origin with epilepsy Epilepsy with eyelid myoclonia Reading seizures Klüver-Bucy syndrome Lobar holoprosencephaly Reflex epilepsy Colorado tick fever Acquired porencephaly Herpes simplex virus encephalitis Progressive epilepsy-intellectual disability syndrome, Finnish type Incontinentia pigmenti Tuberous sclerosis complex Familial focal epilepsy with variable foci Inflammatory and autoimmune disease with epilepsy Autosomal recessive cerebellar ataxia-epilepsy-intellectual disability syndrome due to WWOX deficiency Midline interhemispheric variant of holoprosencephaly Fetal cytomegalovirus syndrome Malignant migrating focal seizures of infancy Progressive myoclonic epilepsy with dystonia Eastern equine encephalitis Autosomal recessive cerebellar ataxia-epilepsy-intellectual disability syndrome due to TUD deficiency Hereditary neurocutaneous malformation Microlissencephaly-micromelia syndrome Neurofibromatosis type 1 Primary microcephaly-epilepsy-permanent neonatal diabetes syndrome Benign familial neonatal epilepsy Diffuse cerebral and cerebellar atrophy-intractable seizures-progressive microcephaly syndrome Infectious disease with epilepsy PEHO syndrome Congenital toxoplasmosis Partington syndrome Early-onset Lafora body disease Progressive myoclonic epilepsy type 3 Childhood-onset epilepsy syndrome Lafora disease Acute disseminated encephalomyelitis Infantile spasms syndrome Familial porencephaly W syndrome Epilepsy-telangiectasia syndrome Encephalitis lethargica Subcortical band heterotopia EAST syndrome Pneumococcal meningitis Rolandic epilepsy-paroxysmal exercise-induced dystonia-writer's cramp syndrome X-linked lissencephaly with abnormal genitalia Progressive myoclonic epilepsy Orgasm-induced seizures Monogenic disease with epilepsy Rubella panencephalitis Continuous spikes and waves during sleep Kleefstra syndrome due to 9q34 microdeletion Benign partial epilepsy with secondarily generalized seizures in infancy Benign childhood occipital epilepsy, Gastaut type Familial temporal lobe epilepsy Autosomal recessive cerebellar ataxia-epilepsy-intellectual disability syndrome Photosensitive epilepsy Audiogenic seizures Autosomal recessive cerebellar ataxia-epilepsy-intellectual disability syndrome due to RUBCN deficiency Atypical Rett syndrome Acute encephalopathy with biphasic seizures and late reduced diffusion La Crosse encephalitis Infantile epileptic-dyskinetic encephalopathy St. Louis encephalitis Partial corpus callosum agenesis-cerebellar vermis hypoplasia with posterior fossa cysts syndrome New-onset refractory status epilepticus Generalized epilepsy with febrile seizures-plus Progressive myoclonic epilepsy type 6 Acute encephalopathy with inflammation-mediated status epilepticus Bilateral parasagittal parieto-occipital polymicrogyria Bilateral generalized polymicrogyria Semilobar holoprosencephaly Schizencephaly Generalized epilepsy-paroxysmal dyskinesia syndrome Dravet syndrome Action myoclonus-renal failure syndrome Benign familial mesial temporal lobe epilepsy Early infantile epileptic encephalopathy Rolandic epilepsy Severe neonatal-onset encephalopathy with microcephaly Autosomal dominant nocturnal frontal lobe epilepsy Landau-Kleffner syndrome Benign focal seizures of adolescence Morvan syndrome West-Nile encephalitis Thinking seizures Mycoplasma encephalitis Cortical dysgenesis with pontocerebellar hypoplasia due to TUBB3 mutation Benign idiopathic neonatal seizures MERRF Occipital pachygyria and polymicrogyria Chromosomal anomaly with epilepsy as a major feature Nodular neuronal heterotopia X-linked spasticity-intellectual disability-epilepsy syndrome Familial encephalopathy with neuroserpin inclusion bodies Benign familial neonatal-infantile seizures Sturge-Weber syndrome Western equine encephalitis Microform holoprosencephaly Polymicrogyria Isolated focal cortical dysplasia Cerebral cortical dysplasia Hyperekplexia-epilepsy syndrome Perioral myoclonia with absences Neuroectodermal melanolysosomal disease NMDA receptor encephalitis Constitutional megaloblastic anemia with severe neurologic disease Atherosclerosis-deafness-diabetes-epilepsy-nephropathy syndrome Unilateral hemispheric polymicrogyria Alobar holoprosencephaly Bilateral frontal polymicrogyria Bilateral perisylvian polymicrogyria Periventricular nodular heterotopia Metabolic diseases with epilepsy Infantile spasms-broad thumbs syndrome Female restricted epilepsy with intellectual disability Meningococcal meningitis Bilateral frontoparietal polymicrogyria Subacute sclerosing leukoencephalitis Childhood absence epilepsy Japanese encephalitis Tick-borne encephalitis Channelopathy with epilepsy Familial infantile myoclonic epilepsy CNTNAP2-related developmental and epileptic encephalopathy Hypothalamic hamartomas with gelastic seizures Porencephaly Early myoclonic encephalopathy 17q11 microdeletion syndrome Ring chromosome 14 syndrome PEHO-like syndrome
7.40831077102484551.47559738974708Epilepsie Bundes-Elternverband e.V. (e.b.e.)
Last updated: 25.02.2026