The Swedish RP Association was formed in 1990. We are a non-profit association for people with eye disease Retinitis Pigmentosa (RP) and related hereditary degenerative retinal diseases. We also encourage relatives, ophthalmologists, opticians and others interested in applying for membership as a supportive member.
Through local groups 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 degeneration. We also want to inform politicians and the general public about RP. The member magazine “Retinanytt” is published four times a year and its main focus is to inform about RP and monitor news in the medical field.
The association is a member of Retina International (RI). RI is an umbrella organization for some 30 RP associations around the world. Within RI, for example, there is a worldwide collaboration focusing on RP research. 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% are relatives and other members. Relatives are often carriers of the disease facilities. About 70% of the members are of working age.
