SE-ATLAS

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

Uvéite Maladie rare avec strabisme Dystrophie maculaire génétique Cataracte polaire antérieure précoce Dystrophie cornéenne stromale congénitale Dystrophie cornéenne amorphe postérieure Télangiectasie de la conjonctive Dystrophie cornéenne de Meesmann Vasculopathie rétinienne avec leucoencéphalopathie cérébrale et manifestations systémiques Rétraction congénitale de la paupière supérieure Cryptophtalmie Rétinoblastome héréditaire Dystrophie cornéenne endothéliale liée à l'X Dysplasie chondroectodermique avec cécité nocturne Syndrome d'Okihiro Rétinopathie paranéoplasique Syndrome de Cogan Uvéite intermédiaire Glaucome à début pédiatrique d'origine génétique Uvéite antérieure Albinisme oculocutané type 1 Maladie de Norrie Syndrome oculo-facio-cardio-dentaire Albinisme oculocutané type 3 Aplasie des glandes salivaires et lacrymales Dystrophie maculaire annulaire concentrique bénigne Syndrome d'Usher type 1 Endophtalmie Syndrome oculo-auriculaire type Schorderet Fundus pulverulentus Syndrome IRVAN Microphtalmie-anophtalmie-colobome isolée Dystrophie cornéenne mouchetée Hémangiome ou hémolymphangiome de la conjonctive SRD5A3-CDG Maladie rare avec ptosis Syndrome d'anomalie de Peters-cataracte Malformation congénitale de la paupière Neuropathie optique héréditaire de Leber Maladie rare de la paupière Panuvéite idiopathique Rétinite ponctuée albescente Bradyopsie Conjonctivite ligneuse Maladie rétinienne héréditaire Uvéite antérieure non infectieuse Syndrome blépharo-cheilo-odontique Albinisme oculocutané type 2 Syndrome de Revesz Syndrome de dyskératose intraépithéliale cornéenne-kératodermie palmoplantaire-dyskératose laryngée Télangiectasie maculaire idiopathique type 1 Maladie de Coats Maculopathie primaire ou secondaire non classifiée Syndrome d'hypomyélinisation-cataracte congénitale Cataracte coralliforme Glaucome associé à une anomalie de la migration des cellules de la crête neurale Endothélite herpétique Dystrophie cornéenne postérieure polymorphe Lésion pigmentée de la conjonctive Dystrophie cornéenne de la membrane basale Syndrome de Knobloch Tumeur épidermique de la paupière Pigmentation réticulée liée au chromosome X Anomalie du bord libre de la paupière Spasmus nutans Albinisme oculaire récessif lié à l'X Uvéite phacoanaphylactique Dystrophie centrale aréolaire de la choroïde Distichiasis isolé Albinisme oculocutané type 4 Syndrome de microcornée-myopie avec atrophie choriorétinienne-télécanthus Spectre de dysplasie septo-optique Anomalie papillaire morning glory Dystrophie maculaire rétinienne type 2 Macroanévrisme artériel rétinien familial Choroïdite serpigineuse Syndrome de Stickler type 1 Microcorie congénitale Anomalie de la pigmentation cutanée avec atteinte ophtalmologique Maladie syndromique avec strabisme Strabisme essentiel Syndrome de Tolosa-Hunt Dystrophie aréolaire et colobomateuse Maladie ophtalmique rare Cataracte céruléenne Malformation congénitale de l'oeil avec glaucome comme manifestation majeure Dystrophie nuageuse centrale de François Dystrophie pseudo-inflammatoire de Sorsby Lymphangiectasie de la conjonctive Dystrophie rétinienne type Bothnie Dystrophie cornéenne de Lisch Drusen familiaux Microphtalmie colobomateuse Tumeur de la paupière Cornea plana congénitale Microblépharon-ablépharie Myopathie autosomique récessive avec ophtalmoplégie externe de l'enfant Neurodégénérescence associée à FA2H Anesthésie congénitale du nerf trijumeau Albinisme oculocutané Syndrome micro Albinisme oculocutané type 1B Maladie ophtalmique des îles Åland Paralysie oculomotrice nucléaire Dystrophie rétinienne avec anomalies de la couche nucléaire interne et des cellules ganglionnaires Délétion distale 6p Rétraction congénitale des paupières Dégénérescence marginale pellucide Syndrome de glaucome-ectopie du cristallin-sphérophakie-raideur articulaire-petite taille Syndrome GAPO Vitréorétinopathie exsudative familiale Syndrome de cataracte congenitale-microcornée-opacité cornéenne Dystrophie endothéliale congénitale héréditaire type I Dermoïde bulbaire ou dermolipome de la conjonctive Syndrome EEM Atrophie optique autosomique dominante plus Lésion précancéreuse de l'épiderme de la paupière Hypotrichose avec dégénérescence maculaire juvénile 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