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