Clinical Trial
Disease
Disease type
Retinitis Pigmentosa
Orphan drug recognition
NA
Inclusion / Exclusion
Funding
industry
Members involved
Main investigators
Others investigators

Pr Katarina Stingl
Representative
Germany
Low Vision Daily Life and Patients Groups (TWG5), Registries & Epidemiology (TWG7), Research (TWG8), Retinal Rare Eye Diseases (WG1)
Working Group Leader

Dr Susanne KOHL
Substitute
Germany
Genetic Diagnostics (TWG6), Registries & Epidemiology (TWG7), Research (TWG8), Retinal Rare Eye Diseases (WG1)
Working Group Leader

Dr Joni Turunen
Representative
Finland
Genetic Diagnostics (TWG6), Pediatric Ophthalmology Rare Diseases (WG3), Research (TWG8)

Dr Philipp Herrmann
Substitute
Germany
CPMS & Digital Medecine (TWG10), Genetic Diagnostics (TWG6), Research (TWG8), Retinal Rare Eye Diseases (WG1)

Pr Carel HOYNG
Representative
Netherlands
Genetic Diagnostics (TWG6), Registries & Epidemiology (TWG7), Research (TWG8), Retinal Rare Eye Diseases (WG1)

Pr Camiel BOON
Representative
Netherlands
Anterior Segment Rare Eye Diseases (WG4), Genetic Diagnostics (TWG6), National Integration (TWG9), Pediatric Ophthalmology Rare Diseases (WG3), Registries & Epidemiology (TWG7), Research (TWG8), Retinal Rare Eye Diseases (WG1)
Working Group Leader
ERN EYE member investigating site
HCP : Principal investigators

Reference Center Rare Diseases ‘Genetic Sensory Diseases’, MAOLYA, Montpellier, France
Adress
Hôpital Gui de ChauliacService Ophtalmologie80, avenue Augustin Fliche 1er étage, bureau 1414
34 295 Montpellier Cedex 5
France

Centre for Ophthalmology, University Eye Hospital, Tübingen, Germany
Adress
Department für Augenheilkunde Tübingen Forschungsinstitut für Augenheilkunde Elfriede-Aulhorn-Str. 7
72076 Tübingen
Germany

University of Bonn, Germany
Adress
Ernst-Abbe-Strasse 2
53127 Bonn
Germany

HUS Helsinki University Hospital, Helsinki, Finland
Adress
Topeliuksenkatu 5
260 Helsinki
Finland

Radboud university medical center, Nijmegen, Netherlands
Adress
Geert Grooteplein Zuid 10
6525 GA Nijmegen
Netherlands

Amsterdam University Medical Center / Leiden University Medical Center
Adress
Meibergdreef 9
1105 AZ Amsterdam
Netherlands