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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 http://www.bassenkornzweigfoundation.org
Achromatopsie Selbsthilfe e.V. Germany http://www.achromatopsie.de
Albinism Fellowship United Kingdom http://www.albinism.org.uk
Alianza Española de Familias de Von Hippel Lindau Spain http://www.alianzavhl.org
Alström Syndrome International USA http://www.alstrom.org
Alström Syndrome UK United Kingdom http://www.alstrom.org.uk
American Nystagmus Network, Inc. USA http://www.nystagmus.org
Aniridia Network UK United Kingdom http://www.aniridia.org.uk
Anna Timmerman vzw Belangenvereniging omtrent doofblindheid Belgium http://www.annatimmerman.be
Asociación Aragonesa de Retinosis Pigmentaria Spain  
Asociación Asturiana de Retinosis Pigmentaria Spain http://www.retinosis.org
Asociación Canaria de Retinosis Pigmentaria Spain http://www.canariasretinosis.org
Asociación Castilla-La Mancha de Retinosis Pigmentaria Spain  
Asociación de Afectados por Retinosis Pigmentaria de la Comunidad Valenciana Spain http://www.retinacv.com
Asociación de Afectados Síndrome de Marfan Spain http://www.marfansima.org
Asociación de Castilla y León de Retinosis Pigmentaria Spain  
Asociación Española de Aniridia Spain http://www.aniridia.es
Asociación Española de Enfermos por Pseudoxantoma Elástico Spain  
Asociación Madrileña de Ataxias Hereditarias Spain http://www.terra.es/personal/atamad/
Asociación para el apoyo e investigación de la enfermedad ceroidolipofuscinosis Spain  

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