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.
|Schweizerische Neurofibromatose - Vereinigung||Switzerland||www.neurofibromatose.ch|
|Schweizerische Sarkoidose - Vereinigung (Morbus Boeck)||Switzerland||www.sarkoidose.ch|
|Schweizerische Vereinigung Osteogenesis Imperfecta - Association Suisse Osteogenesis Imperfecta||Switzerland||www.svoi-asoi.ch|
|Selbsthilfegruppe Franceschetti e. V.||Germany||www.franceschetti.de|
|Selbsthilfegruppe Morbus Coats||Germany|
|Stickler Involved People||USA||www.sticklers.org|
|Stickler Syndrome Support Group||United Kingdom||www.stickler.org.uk|