The association was founded in 1993, as an organization for persons with the eye disease retinitis pigmentosa (RP), and their relatives and close friends.
Today (2014), the organization has some 750 members, from all regions of Norway. The purpose of the organization is to disseminate information about the disease and the ongoing research, to the members and relevant professionals in Norway, and to support research on inherited retinal diseases.
The organization is based on voluntary work, and has no permanent employees. The elected board members (5 + 2 alternates), and a subgroup for information (4), are responsible for all activities. The organization is assisted in the evaluation of scientific material and research projects by a Scientific and Medical Advisory Board, which also renders its support on a voluntary basis.
The annual activities include two major conferences, aimed at the members. The spring conference is combined with the General Assembly, which elects the board and approves the budget for the coming year. The conferences are thematically concentrated around new research, rehabilitation issues, strategies for living with RP, and other relevant activities. Occasionally, regional or youth conferences are also arranged.
The organization has a website, which covers research news and other information pertaining to the retinal diseases in question. The activities of the organization are also presented.
Quarterly, we publish a magazine, RP-nytt, which is circulated to all members and to approximately 100 institutions and professionals.
Other informational materials include films, a booklet of 72 pages replying to the large number of questions raised by RP sufferers, and other material for presentation of RP at information stands. We have among other items produced 7 small booklets covering some of the more specialized versions of inherited retinal diseases and syndromes (such as LCA, Ushers syndrome, LMBB, Stargardts). Recently, we have intensified our participation with such stands at meetings of ophthalmologists, opticians, visual therapists and other specialists within the field of visual impairment, including Nordic meetings.
Except for the two films, which have subtitles in English, all our information material is in Norwegian.
The organization has a research fund, which – despite modest means – has been able to support research both on RP and other relevant issues. We support the participation of Norwegian ophthalmologists in international research conferences and meetings. The establishment of a registry of RP and other inherited retinal dystrophies has been a central task for the organisation. We have given both financial and practical support for such a registry, which now has been organized by the Oslo University Hospital, Ullevål. We have organized and financed the genetic testing of 200 of our members, which form a major part of the new registry.
If you contact us in English, we will reply in English.
As many members enjoy sports and out door activities (tandem cycling, skiing, long distance running, hikes), we have organized and financed a group for participation in such events, named Team RP.
The Norwegian RP Association has been a full member of Retina International since 1998, and participates in all activities of that organisation. During the last decade, the RP organizations in the Nordic countries have also established close cooperation, including annual meetings, in order to exchange ideas, possible joint projects and research news.