The Swedish RP Association was established in 1990. We are a non-governmental association, based on voluntary resources, for and by people with Retinitis Pigmentosa (RP) and related hereditary degenerative retinal diseases. We also encourage relatives, ophthalmologists, opticians and others interested in seeking membership as a supportive member.
Through local communities in the country, we want to enable members to support and help each other. An important task is to support and monitor research on retinal degenerations. We also want to inform politicians and public about RP. The magazine “Retinanytt” is published four times a year and has the main focus on informing RP and monitoring news in medical development.
The association is a member of Retina International (RI). RI is an umbrella organization for around 30 RP associations around the world. Within RI, a worldwide collaboration with focus on RP research is conducted. Every year there is also a Nordic meeting where we meet the RP associations from Denmark, Finland, Norway and Iceland.
Today the association has about 600 members. Of these, about 80 % are retinitics and about 20 % relatives and other members. Relatives are often the carrier of the RP genes. About 70 % of the members are in working age.
When the association’s annual and autumn meetings are usually held for a weekend, members are given the opportunity to meet and exchange experiences. On these occasions we invite interesting researchers, lecturers and even assistive technology companies. All in order to keep members up to date with the latest developments in all areas that may affect RP.
Local activities are to be found in Gothenburg, Malmö/Skåne, Stockholm, Värmland and Örebro.
The Association’s Research Fund allocates funds and scholarships to RP-related research projects. The fund also allocates travel grants to younger RP researchers.
As of January 1, 2010, the Swedish RP Association is an industry organization within the Swedish Association for Visually Impaired Persons (SRF).
For further information in English, please contact the association by email: firstname.lastname@example.org