Many people report that it took many years to achieve a clinical diagnosis of BCM. This is due to the fact that the BCM is a rare disease and you need to consult ophthalmologists specializing in inherited retinal diseases.
Here are some ophthalmologists who have visited other patients with BCM or have worked in scientific research on BCM and/or on similar diseases.
In particular, some eye doctors are carrying out research funded by our foundation and have been chosen for their expertise and for their interest in regard to the BCM.
Ophthalmologists and clinical centers expert in BCM
Prof. Isabelle Audo, MD, PhD
Director Center for Hereditary Retinal Degenerations and Retinal Function Department, Scheie Eye Institute, University of Pennsylvania
Professor at Sorbonne Université and the CHNO of Quinze-Vingts
Group leader, team S6, A to Z, Department of genetics, Institut de la Vision
Coordinator of the certified biobank NeuroSensCol for genetic research in Inherited sensory disorders
Head of the Electrodiagnostic Unit, CHNO of Quinze-Vingts
Head of ophthalmic pediatrics, CHNO of Quinze-Vingts
Deputy coordinator of the Center for Rare Diseases “inherited retinal diseases
I Investigator at the Clinical Investigation Center CIC1423
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Pr Hélène Dollfuss, MD, PhD
Director Center for Hereditary Retinal Degenerations and Retinal Function Department, Scheie Eye Institute, University of Pennsylvania
Specialized in Medical Genetics and Ophthalmology,
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Dr. Isabelle Meunier
Director Center for Hereditary Retinal Degenerations and Retinal Function Department, Scheie Eye Institute, University of Pennsylvania
Ophthalmologist
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Pr. Matthieu ROBERT
Director Center for Hereditary Retinal Degenerations and Retinal Function Department, Scheie Eye Institute, University of Pennsylvania
Ophtalmologue
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Guylene LE MEUR
Director Center for Hereditary Retinal Degenerations and Retinal Function Department, Scheie Eye Institute, University of Pennsylvania
CHU de Nantes – Hôtel Dieu
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Geneticists
Dr. Pierre Bitoun
Director Center for Hereditary Retinal Degenerations and Retinal Function Department, Scheie Eye Institute, University of Pennsylvania
Genetique medicale
Pédiatre, Généticien
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Expert low vision centers and optometrists
1.Philippe DA ROCHA
Directeur du service basse vision
Address: 114 rue de Rivoli 75001 Paris
2.Société francophone de BASSE VISION
La rééducation visuelle des patients malvoyants fait l’objet, dans notre pays, d’un développement et d’un intérêt croissant auprès de tous les professionnels impliqués. Après la réunion d’États Généraux de la basse vision en mai 1995 à Paris, nous avons créé une association Loi 1901. https://www.ariba-vision.org/adherents/
Visual Impairment Call-Centers and consultancy centers for people with visual impairment
Il s’agit d’une plateforme téléphonique professionnelle nationale gratuite où nous répondons à toute question pratique liée à une situation de déficience visuelle sur la France entière
Julien Cohen
Email: julien.cohen@arradv.fr
Website: www.arradv.fr
Phone: ARRADV- 0 800 013 010
Other Services
Pr Dominique Bremond-Gignac
OPHTARA – Hôpital Cochin, Paris, France
https://maladiesrares-necker.aphp.fr/ophtara/
149 rue de Sèvres 75743 PARIS Cedex 15
Le guide d’information sur la prise en charge de la basse vision pour les personnes en situation de handicap visuel de 0 à 25 ans. IOP_GUIDE_BASSE_VISION_2022_FINAL.01
Ce guide recense toutes les informations essentielles pour obtenir une prise en charge de qualité pour les personnes en situation de handicap visuel présentant une basse vision.
Il a pour objectif de mieux informer, accompagner les proches et les patients atteints, dans leurs démarches médicales, paramédicales et administratives, pour leur donner toutes les chances de mieux vivre avec leur handicap. Ces conseils pourront être utiles au quotidien des personnes en situation de handicap visuel et permettre de limiter une aggravation de la maladie.
Ce guide a été réalisé avec la participation d’associations de patients, dont Géniris, Genespoir, Retina France et Inflam’œil.