SE-ATLAS

Cartographie des Institutions de prise en charge
pour personnes atteintes de maladies rares

Bundesvereinigung Eltern blinder und sehbehinderter Kinder e.V. (BEBSK)

Note relative à la donnée

Description du association de patient

Die BEBSK e. V. ist ein Zusammenschluss von Eltern blinder und sehbehinderter Kinder, die sich einen Rahmen gegeben haben, um ihre Erfahrungen an andere Eltern weiterzugeben und sich mit diesen auszutauschen. Jedes Mitglied profitiert von diesem Austausch, sowohl der Vorstand, als auch die Regionalvertreter und die Mitglieder.

Alle Vorstandsmitglieder und Regionalvertreter haben blinde oder sehbehinderte Kinder. Die Vereinigung ist zu 100% ehrenamtlich geführt und bundesweit aktiv.

Die Vorstandsmitglieder und Regionalvertreter leisten in ihrer Freizeit Hilfen unterschiedlichster Art für Mitglieder und Nichtmitglieder. Darüber hinaus werden regionale und überregionale Aktionen und Veranstaltungen organisiert. Durch die stetig wachsende Mitgliederanzahl ist dies eine immer größer werdende Aufgabe.

Die BEBSK e. V. hat inzwischen mehr als 610 Mitglieder.

Care provisions

Cette association de patients offre:
  • Conseil social/juridique
  • Forum interne
  • Rencontre régulière
  • Fédération régionale / Représentant régional
  • Newsletter / Magazine de la federation

contact

0178 8685013
info@bebsk.de
Page Web

https://www.bebsk.de/

adresse

Winckelmannstraße 61
12487 Berlin

Calculer l'itinéraire

Aperçu des maladies présentes 1

Uveitis Rare disorder with strabismus Genetic macular dystrophy Early-onset anterior polar cataract Congenital stromal corneal dystrophy Posterior amorphous corneal dystrophy Conjunctival telangiectasia Meesmann corneal dystrophy Retinal vasculopathy with cerebral leukoencephalopathy and systemic manifestations Congenital upper palpebral retraction Cryptophthalmia Hereditary retinoblastoma X-linked endothelial corneal dystrophy Chondroectodermal dysplasia with night blindness Okihiro syndrome Cancer-associated retinopathy Cogan syndrome Intermediate uveitis Pediatric-onset glaucoma of genetic origin Anterior uveitis Oculocutaneous albinism type 1 Norrie disease Oculofaciocardiodental syndrome Oculocutaneous albinism type 3 Aplasia of lacrimal and salivary glands Benign concentric annular macular dystrophy Usher syndrome type 1 Endophthalmitis Oculoauricular syndrome, Schorderet type Fundus pulverulentus IRVAN syndrome Isolated microphthalmia-anophthalmia-coloboma Fleck corneal dystrophy Conjunctival hemangioma or hemolymphangioma SRD5A3-CDG Rare disorder with ptosis Peters anomaly-cataract syndrome Congenital malformation of the eyelid Leber hereditary optic neuropathy Rare palpebral disorder Idiopathic panuveitis Retinitis punctata albescens Bradyopsia Ligneous conjunctivitis Inherited retinal disorder Non-infectious anterior uveitis Blepharo-cheilo-odontic syndrome Oculocutaneous albinism type 2 Revesz syndrome Corneal intraepithelial dyskeratosis-palmoplantar hyperkeratosis-laryngeal dyskeratosis syndrome Idiopathic macular telangiectasia type 1 Coats disease Unclassified primitive or secondary maculopathy Hypomyelination-congenital cataract syndrome Coralliform cataract Glaucoma associated with neural crest cell migration anomaly Corneal endotheliitis Posterior polymorphous corneal dystrophy Pigmented conjunctival lesion Epithelial basement membrane dystrophy Knobloch syndrome Palpebral epidermal tumor X-linked reticulate pigmentary disorder Eyelid border anomaly Spasmus nutans X-linked recessive ocular albinism Phacoanaphylactic uveitis Central areolar choroidal dystrophy Isolated distichiasis Oculocutaneous albinism type 4 Microcornea-myopic chorioretinal atrophy-telecanthus syndrome Septo-optic dysplasia spectrum Morning glory disc anomaly Retinal macular dystrophy type 2 Familial retinal arterial macroaneurysm Serpiginous choroiditis Stickler syndrome type 1 Congenital microcoria Pigmentation disorder with eye involvement Syndromic disorder with strabismus Essential strabismus Tolosa-Hunt syndrome Colobomatous and areolar dystrophy Rare ophthalmic disorder Cerulean cataract Congenital malformation of the eye with glaucoma as a major feature Central cloudy dystrophy of François Sorsby pseudoinflammatory fundus dystrophy Conjunctival lymphangiectasia Bothnia retinal dystrophy Lisch epithelial corneal dystrophy Familial drusen Colobomatous microphthalmia Palpebral tumor Congenital cornea plana Microblepharon-ablephara syndrome Childhood-onset autosomal recessive myopathy with external ophthalmoplegia Fatty acid hydroxylase-associated neurodegeneration Congenital trigeminal anesthesia Oculocutaneous albinism Micro syndrome Oculocutaneous albinism type 1B Åland Islands eye disease Nuclear oculomotor paralysis Retinal dystrophy with inner retinal dysfunction and ganglion cell anomalies Distal deletion 6p Congenital eyelid retraction Pellucid marginal degeneration Glaucoma-ectopia lentis-microspherophakia-stiff joints-short stature syndrome GAPO syndrome Familial exudative vitreoretinopathy Congenital cataract microcornea with corneal opacity Congenital hereditary endothelial dystrophy type I Bulbar conjunctival dermoid or conjunctival dermolipoma EEM syndrome Autosomal dominant optic atrophy plus syndrome Precancerous lesion of palpebral epidermis Hypotrichosis with juvenile macular degeneration Late-onset retinal degeneration Early-onset X-linked optic atrophy Microtia-eye coloboma-imperforation of the nasolacrimal duct syndrome Gyrate atrophy of choroid and retina Coloboma of macula-brachydactyly type B syndrome Isolated congenital sclerocornea Bilateral acute depigmentation of the iris Primary early-onset glaucoma Congenital ectropion uveae Congenital primary aphakia Familial pterygium of the conjunctiva Microphthalmia, Lenz type Systemic diseases with panuveitis Rare oculomotor nerve disorder Vitreoretinopathy Retinal degeneration-nanophthalmos-glaucoma syndrome Early-onset partial cataract Anterior segment developmental anomaly without extraocular manifestations Early-onset nuclear cataract Goniodysgenesis Goldmann-Favre syndrome Fuchs endothelial corneal dystrophy Stickler syndrome type 2 Conjunctival tumor Gelatinous drop-like corneal dystrophy Benign tumor of palpebral epidermis Retinoblastoma Vasoproliferative tumor of the retina Hereditary benign intraepithelial dyskeratosis North Carolina macular dystrophy Oligocone trichromacy Corneodermatoosseous syndrome PEHO syndrome Kandori fleck retina Isolated congenital megalocornea Ocular albinism Infectious epithelial keratitis Toxic maculopathy due to antimalarial drugs Paraneoplastic uveitis Eales disease Ocular coloboma WAGR syndrome Idiopathic posterior uveitis Autosomal recessive Stickler syndrome Blindness-scoliosis-arachnodactyly syndrome Myopic macular degeneration Coats plus syndrome Disease predisposing to age-related macular degeneration Microcornea-posterior megalolenticonus-persistent fetal vasculature-coloboma syndrome Corneal dystrophy-perceptive deafness syndrome Palpebral sebaceous gland tumor Retinitis pigmentosa Congenital entropion Blepharophimosis-ptosis-epicanthus inversus syndrome Autosomal dominant optic atrophy and peripheral neuropathy Cystoid macular dystrophy Aniridia-renal agenesis-psychomotor retardation syndrome Sympathetic ophthalmia Dermochondrocorneal dystrophy X-linked corneal dermoid Non-infectious posterior uveitis Keratoconus Aceruloplasminemia MMEP syndrome Moebius syndrome Muir-Torre syndrome Epithelial recurrent erosion dystrophy Supranuclear eye movement disorder Vitreoretinal degeneration Lens position anomaly Total early-onset cataract Corneoiridogoniodysgenesis Juvenile glaucoma Rare isolated myopia Thiel-Behnke corneal dystrophy Rare disorder of the lacrimal apparatus Coloboma of eye lens Juvenile cataract-microcornea-renal glucosuria syndrome Coloboma of choroid and retina Malignant tumor of palpebral epidermis X-linked retinoschisis Rare eyelid malposition disorder Bardet-Biedl syndrome Congenital hereditary endothelial dystrophy type II Foveal hypoplasia-optic nerve decussation defect-anterior segment dysgenesis syndrome Okihiro syndrome due to 20q13 microdeletion Aniridia-cerebellar ataxia-intellectual disability syndrome Achromatopsia Fuchs heterochromic iridocyclitis Colobomatous microphthalmia-obesity-hypogenitalism-intellectual disability syndrome Early-onset non-syndromic cataract MORM syndrome Oculocutaneous albinism type 7 Fundus albipunctatus Cataract-glaucoma syndrome Congenital trochlear nerve palsy Optic atrophy-intellectual disability syndrome Congenital vitreoretinal dysplasia Birdshot chorioretinopathy Lens size anomaly Early-onset posterior polar cataract Corneodysgenesis Ataxia-oculomotor apraxia type 1 Congenital glaucoma Stargardt disease Rare refraction anomaly Subepithelial mucinous corneal dystrophy Ectopia lentis-chorioretinal dystrophy-myopia syndrome Acute endophthalmitis Aniridia Renal coloboma syndrome Microphthalmia with brain and digit anomalies Autosomal dominant rhegmatogenous retinal detachment Infectious anterior uveitis Peters anomaly Autosomal dominant neovascular inflammatory vitreoretinopathy Early-onset progressive neurodegeneration-blindness-ataxia-spasticity syndrome Neurotrophic keratopathy Microphthalmia-retinitis pigmentosa-foveoschisis-optic disc drusen syndrome Oculocutaneous or ocular albinism Polymicrogyria with optic nerve hypoplasia Corneal dystrophy Autosomal dominant optic atrophy Choroideremia Lens shape anomaly Rare disease with glaucoma as a major feature Chandler syndrome Stickler syndrome Familial flecked retinopathy Rare hyperopia and astigmatism Granular corneal dystrophy type I Isolated ectopia lentis Congenital alacrima Coloboma of macula Persistent hyperplastic primary vitreous Hereditary hyperferritinemia-cataract syndrome 3-methylglutaconic aciduria type 3 Palpebral lentiginosis Congenital ectropion Developmental defect of the eye Autosomal recessive bestrophinopathy Grayson-Wilbrandt corneal dystrophy Oguchi disease Retinal dystrophy-optic nerve edema-splenomegaly-anhidrosis-migraine headache syndrome Peters plus syndrome Aniridia-ptosis-intellectual disability-familial obesity syndrome Tritanopia Vogt-Koyanagi-Harada disease Persistent placoid maculopathy Usher syndrome type 2 Occult macular dystrophy Congenital stationary night blindness Hereditary vascular retinopathy Oculomotor apraxia Macular coloboma-cleft palate-hallux valgus syndrome Hereditary optic neuropathy HERNS syndrome Early-onset zonular cataract X-linked retinal dysplasia Secondary glaucoma due to a proliferation and differentiation anomaly Axenfeld anomaly Reis-Bücklers corneal dystrophy Secretory apparatus of the lacrimal system anomaly Coloboma of iris Rare inflammatory eye disease Pigmented palpebral tumor Pigmented paravenous retinochoroidal atrophy Microspherophakia-metaphyseal dysplasia syndrome Entropium, sekundäres Aniridie-Intelligenzminderung-Syndrom Epiblepharon Systemische Krankheit mit posteriorer Uveitis Albinismus, okulokutaner, Typ 6 Okulärer Albinismus mit spät einsetzender sensorineuraler Schwerhörigkeit Anomalie des Nervensystems mit Augenkrankheit Duane-Retraktionssyndrom Keratokonjunktivitis, atopische Vaskulopathie, zerebro-retinale Vitreoretinale Krankheit, genetisch bedingte Behr-Syndrom Keratokonjunktivitis, limbische superiore Wagner-Krankheit Katarakt, seltene Irisatrophie, essentielle Zerebelläre Ataxie - Areflexie - Pes cavus - Optikusatrophie - sensorineurale Schwerhörigkeit Keratokonus, syndromaler Hornhautdystrophie, gittrige, Typ 1 Prae-Descemet-Hornhautdystrophie Papillenkolobom Gardner-Syndrom Megalokornea - Sphärophakie - sekundäres Glaukom Frühjahrskonjunktivitis Panuveitis, infektiöse Lidwinkel-Anomalie Anophtalmie-Mikrophtalmie-Syndrom Uveitis, anteriore, idiopathische Mikrokornea-Korektopie-Makulahypoplasie-Syndrom Endophthalmitis, chronische Retinopathie, akute äußere ringförmige Zapfendystrophie mit supernormalen Stäbchen-B-Wellen MRCS-Syndrom Aniridie-Patellaaplasie-Syndrom Hochgradige Myopie-sensorineurale Schwerhörigkeit-Syndrom Okulärer Albinismus mit kongenitaler sensorineuraler Schwerhörigkeit Ptosis - Bewegungseinschränkung des Auges - Fehlen des Tränenpünktchens Pigmentierungsstörung mit Augenbeteiligung (exklusive Albinismus) Augenbewegungsstörung Sehnerv-Hypoplasie/Aplasie, isolierte Dysgenesie des vorderen Augensegmentes Optikusatrophie, autosomal-dominante, klassische Form Augenkrankheit, genetisch bedingte Linsen/Zonula-Anomalie Cogan-Reese-Syndrom Zapfendystrophie, progressive Hyperopie, syndromale Granuläre Hornhautdystrophie Typ II Alström-Syndrom Störung des exkretorischen Apparates der Tränenwege Lidkolobom Vitreoretinale Schneeflocken-Degeneration Naevus de la paupière Syndrome de microcornée-glaucome-absence de sinus frontaux Panuvéite Anomalie de l'oeil par altération des processus d'induction oculaire majeurs Syndrome de Hermansky-Pudlak par déficit en AP-3 Syndrome de cataracte-microcornée Albinisme oculocutané syndromique Dégénérescence spinocérébelleuse et paraparésie spastique avec anomalie oculomotrice Nanophtalmie Dystrophie maculaire en ailes de papillon Cataracte pulvérulente Dystrophie cornéenne stromale Dystrophie rétinienne progressive par déficit de transport du rétinol Dystrophie cornéenne de Schnyder Dystrophie des cônes et des bâtonnets Dystrophie cornéenne superficielle Hypomagnésémie primaire avec hypercalciurie et néphrocalcinose avec atteinte oculaire sévère Microphtalmie syndromique type 5 Tumeur mésenchymateuse de la paupière Neuromyélite optique Aniridie syndromique Amaurose congénitale de Leber Syndrome de dysplasie dyssegmentaire-glaucome Ankyloblépharon filiforme adnatum isolé Pattern dystrophie Albinisme oculocutané type 5 Syndrome de déficience intellectuelle-alacrimie-achalasie Syndrome d'Usher type 3 Ectropion congénital isolé Rétinopathie du prématuré Syndrome tarsal kink Maladie acquise de l'oeil Rétinopathie occulte externe zonale aiguë Uvéite postérieure infectieuse Syndrome de microphtalmie-ankyloblépharon-déficience intellectuelle Albinisme oculocutané type 1 avec pigmentation minime Maladie neuro-ophtalmologique Syndrome de blépharoptosis-myopie-ectopie du cristallin Ataxie spinocérébelleuse avec anomalie oculomotrice Autosomal recessive isolated optic atrophy Adult-onset foveomacular vitelliform dystrophy Color-vision disease Idiopathic uveal effusion syndrome Syndromic cataract Severe early-childhood-onset retinal dystrophy Ataxia-intellectual disability-oculomotor apraxia-cerebellar cysts syndrome Isolated cryptophthalmia Spastic ataxia-corneal dystrophy syndrome Palpebral piliary tumor Axenfeld-Rieger syndrome Epicanthal fold Congenital Horner syndrome Mitochondrial DNA-related progressive external ophthalmoplegia Amaurosis-hypertrichosis syndrome Familial congenital palsy of trochlear nerve Matthew-Wood syndrome Idiopathic linear interstitial keratitis Autosomal dominant keratitis Temperature-sensitive oculocutaneous albinism type 1 Microphthalmia-brain atrophy syndrome Iridocorneal endothelial syndrome Unclassified familial retinal dystrophy Idiopathic macular telangiectasia type 3 Posterior uveitis Multifocal pattern dystrophy simulating fundus flavimaculatus Best vitelliform macular dystrophy Syndromic corneal dystrophy Congenital retinal arteriovenous communication Systemic diseases with anterior uveitis Macular corneal dystrophy Conjunctival vascular anomaly Syndromic optic nerve hypoplasia Neovascular glaucoma Kinetic eyelid anomaly Neurogenic palpebral tumor Gonococcal conjunctivitis Okihiro syndrome due to a point mutation Autosomal dominant optic atrophy and cataract Isolated aniridia Helicoid peripapillary chorioretinal degeneration Retinal capillary malformation Rare palpebral, lacrimal system and conjunctival disease Microphthalmia with linear skin defects syndrome Bietti crystalline dystrophy Autosomal recessive optic atrophy, OPA7 type Progressive bifocal chorioretinal atrophy Syndromic microphthalmia-anophthalmia-coloboma Oculocutaneous albinism type 1A Blue cone monochromatism Horizontal gaze palsy with progressive scoliosis Non-hereditary retinoblastoma Isolated congenital alacrima X-linked cone dysfunction syndrome with myopia Anophthalmia/microphthalmia-esophageal atresia syndrome Anomalie de Rieger Kératite stromale à herpes simplex Syndrome d'ablépharie-macrostomie Syndrome triple A Maladie de Leber plus Dystrophie à bâtonnets prédominants syndromique Syndrome d'Usher Dystrophie réticulée de l'épithélium pigmentaire rétinien Cataracte suturale précoce Dystrophie cornéenne postérieure Maladie rare avec atteinte conjonctivale comme manifestation majeure Apraxie oculomotrice type Cogan Tumeur de la paupière avec malformation vasculaire Syndrome EDICT Télécanthus syndromique Rétine tachetée familiale bénigne Maladie rare de l'oeil par anomalie de la différenciation Pemphigoïde oculaire cicatricielle Vitréo-rétino-choroïdopathie autosomique dominante Euryblépharon Amylose AGel
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Dernière modification: 13.10.2023