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Mapping of Health Care Providers
for People with Rare Diseases

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

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Description of patient organisation

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

This support group organisation offers the following
  • Social / legal advice
  • Internal forum
  • Regular meetings
  • Regional associations / regional representatives
  • Newsletter / Association journal

Contact

0178 8685013
info@bebsk.de
Website

https://www.bebsk.de/

Address

Winckelmannstraße 61
12487 Berlin

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Preview of the represented diseases 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 Secondary entropion Aniridia-intellectual disability syndrome Epiblepharon Systemic diseases with posterior uveitis Oculocutaneous albinism type 6 Ocular albinism with late-onset sensorineural deafness Nervous system anomaly with eye involvement Duane retraction syndrome Atopic keratoconjunctivitis Cerebroretinal vasculopathy Genetic vitreous-retinal disease Behr syndrome Superior limbic keratoconjunctivitis Wagner disease Rare disorder with lens opacification Essential iris atrophy Cerebellar ataxia-areflexia-pes cavus-optic atrophy-sensorineural hearing loss syndrome Syndromic keratoconus Lattice corneal dystrophy type I Pre-Descemet corneal dystrophy Coloboma of optic disc Gardner syndrome Glaucoma secondary to spherophakia/ectopia lentis and megalocornea Vernal keratoconjunctivitis Infectious panuveitis Canthal anomaly Microphthalmia-anophthalmia-coloboma Idiopathic anterior uveitis Microcornea-corectopia-macular hypoplasia syndrome Chronic endophthalmitis Acute annular outer retinopathy Cone dystrophy with supernormal rod response MRCS syndrome Aniridia-absent patella syndrome High myopia-sensorineural deafness syndrome Ocular albinism with congenital sensorineural deafness Ptosis-upper ocular movement limitation-absence of lacrimal punctum syndrome Pigmentation disorder with eye involvement, excluding albinism Abnormal eye movements Isolated optic nerve hypoplasia/aplasia Anterior segment developmental anomaly Autosomal dominant optic atrophy, classic form Rare genetic eye disease Rare lens disease Cogan-Reese syndrome Progressive cone dystrophy Syndromic hyperopia Granular corneal dystrophy type II Alström syndrome Lacrimal drainage system anomaly Coloboma of eyelid Snowflake vitreoretinal degeneration Palpebral nevus Microcornea-glaucoma-absent frontal sinuses syndrome Panuveitis Major induction processes eye anomaly Hermansky-Pudlak syndrome due to AP-3 deficiency Cataract-microcornea syndrome Syndromic oculocutaneous albinism Spinocerebellar degenerescence and spastic paraparesis with an oculomotor anomaly Nanophthalmos Butterfly-shaped pigment dystrophy Pulverulent cataract Stromal corneal dystrophy Progressive retinal dystrophy due to retinol transport defect Schnyder corneal dystrophy Cone rod dystrophy Superficial corneal dystrophy Primary hypomagnesemia with hypercalciuria and nephrocalcinosis with severe ocular involvement Syndromic microphthalmia type 5 Mesenchymatous palpebral tumor Neuromyelitis optica spectrum disorder Syndromic aniridia Leber congenital amaurosis Dyssegmental dysplasia-glaucoma syndrome Isolated ankyloblepharon filiforme adnatum Pattern dystrophy Oculocutaneous albinism type 5 Intellectual disability-alacrima-achalasia syndrome Usher syndrome type 3 Isolated congenital ectropion Retinopathy of prematurity Tarsal kink syndrome Rare acquired eye disease Acute zonal occult outer retinopathy Infectious posterior uveitis Microphthalmia-ankyloblepharon-intellectual disability syndrome Minimal pigment oculocutaneous albinism type 1 Neuro-ophthalmological disease Blepharoptosis-myopia-ectopia lentis syndrome Spinocerebellar ataxia with oculomotor anomaly 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 Rieger anomaly Herpes simplex virus stromal keratitis Ablepharon macrostomia syndrome Triple A syndrome Leber plus disease Syndromic rod-cone dystrophy Usher syndrome Reticular dystrophy of the retinal pigment epithelium Early-onset sutural cataract Posterior corneal dystrophy Rare disorder with conjunctival involvement as a major feature Ocular motor apraxia, Cogan type Palpebral tumor with a vascular malformation EDICT syndrome Syndromic telecanthus Familial benign flecked retina Rare eye disease due to a differentiation anomaly Ocular cicatricial pemphigoid Autosomal dominant vitreoretinochoroidopathy Euryblepharon AGel amyloidosis
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Last updated: 13.10.2023