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Patient Organisations

Patient organisations are important partners in Vision Research. At the national and European level, patients’ organizations and associated umbrella groups have increased considerably in number and impact of the research efforts over the last years and some of them are actively involved in research projects. The voice of patient representatives are necessary in relation to public health issues, the dialogue with the health industry, to improve regulations and health care policies, take ethical issues into serious consideration and last not least as profound partners of the researchers. For the Vision Research community patients’ voices are mandatory.

Patient Organisations

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Organisation Country Website
A Cure for Bassen Kornzweig Foundation USA
Achromatopsie Selbsthilfe e.V. Germany
Albinism Fellowship United Kingdom
Alianza Española de Familias de Von Hippel Lindau Spain
Alström Syndrome International USA
Alström Syndrome UK United Kingdom
American Nystagmus Network, Inc. USA
Aniridia Network UK United Kingdom
Anna Timmerman vzw Belangenvereniging omtrent doofblindheid Belgium
Asociación Aragonesa de Retinosis Pigmentaria Spain  
Asociación Asturiana de Retinosis Pigmentaria Spain
Asociación Canaria de Retinosis Pigmentaria Spain
Asociación Castilla-La Mancha de Retinosis Pigmentaria Spain  
Asociación de Afectados por Retinosis Pigmentaria de la Comunidad Valenciana Spain
Asociación de Afectados Síndrome de Marfan Spain
Asociación de Castilla y León de Retinosis Pigmentaria Spain  
Asociación Española de Aniridia Spain
Asociación Española de Enfermos por Pseudoxantoma Elástico Spain  
Asociación Madrileña de Ataxias Hereditarias Spain
Asociación para el apoyo e investigación de la enfermedad ceroidolipofuscinosis Spain