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.
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
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
13.50598653112083352.440674349999995Bundesvereinigung Eltern blinder und sehbehinderter Kinder e.V. (BEBSK)
Last updated:
13.10.2023