Pro Retina Germany

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PRO RETINA Germany e. V. is a self-help association for people with retinal degeneration . It was founded in 1977 as the Deutsche Retinitis Pigmentosa Vereinigung e. V. (DRPV) was founded by RP sufferers with the intention of helping themselves to cope with the problems caused by visual impairment by promoting medical research and exchanging experiences . The main goals of the association are:

  • Promotion of research into retinal degeneration with the aim of finding a therapy,
  • Information, advice and practical help for those affected and their relatives,
  • Educating the public about the consequences of retinal degeneration and
  • Influence on state and private institutions to support the interests of those affected and research.

Pro Retina Germany claims to have over 6,000 members. The predominantly voluntary work of the association is carried out by the board of directors, an assembly of delegates, several departments and their assigned working groups and regional groups, as well as an office. The non-profit association has set up a foundation to promote research.

Group of people

In the association people get involved with u. a. the following retinal diseases:

Retinal degenerations are diseases of the retina , i.e. the part of the eye that contains the photoreceptors. The causes are often to be found in genetic changes and / or are age-dependent. The effects are very different depending on the type of disease. For retinitis pigmentosa and macular degeneration there is a simulation on the PRO-RETINA homepage with the help of which one can get an impression of what and how an affected person sees.

Research funding

Foundation for the Prevention of Blindness

The PRO RETINA Foundation for the Prevention of Blindness was set up in 1996 to promote research, and its proceeds are used exclusively for research funding. In 2007 it was established as a legally independent foundation. Her focus is on the cause and therapy research in retinal degeneration. Research funding instruments are in particular:

  • Endowed professorships,
  • PhD scholarships and
  • Research awards.

One specific result of the research funding is the Ret-Chip for diagnosing hereditary retinal diseases. The Scientific and Medical Advisory Board (WMB) provides advice on the selection, support and evaluation of research projects. Well-known scientists from a wide variety of disciplines belong to it.

Retinal Disease Patient Registry

In order to make it easier for those affected by retinal degeneration to take part in clinical studies and at the same time to actively promote research, the association has set up a patient register .

Helping people help themselves

Those affected and their relatives organized in Pro Retina Germany help each other by exchanging ideas on social, professional, practical and private issues. The idea is to help people help themselves. The self-help association has contact persons and working groups who offer advice and help for all relevant subject areas.

  • Youth group (from 16 to 30)
  • Working group parents - for parents of affected children
  • Social working group
  • Psychological Counseling Working Group
  • Legal advice for members
  • Diagnosis-specific working groups
  • Working group tools
  • Working group mobility
  • Patient telephone

In the cities of Bonn, Ahaus, Düsseldorf, Göttingen, Cologne, Münster, Rostock and Tübingen, PRO RETINA consultation hours are held in cooperation with the local clinics. The Working Group Clinical Questions (AKF) provides advice on medical questions, explaining the current medical treatment options, developing recommendations and answering patient questions.

Public relations and advocacy

The public is informed about retinal degeneration and its effects on those affected. For this purpose, patient symposia and lectures are organized. There are information brochures, magazines and mailing lists on:

  • State of research (brochure and newsletter)
  • various retinal degenerations
  • social issues
  • Tools
  • Accessibility
  • the quarterly membership magazine "Retina aktuell"
  • various topic-specific mailing lists for the dissemination of current information.

By working in communal institutions and political committees, we strive for relief such as high-contrast design in public spaces and improved access to information.

Memberships

The association is a member of numerous organizations that deal with blindness, visual impairment, self-help and related topics, and participates in their work. These organizations include:

Web links

Individual evidence

  1. ↑ Presentation of the association
  2. ↑ Atrophia gyrata at PRO RETINA Germany e. V.
  3. ↑ Chorioideremia at PRO RETINA Germany e. V.
  4. ↑ Kearns-Sayre syndrome at PRO RETINA Deutschland e. V.
  5. ↑ Myopia and macular degeneration at PRO RETINA Deutschland e. V.
  6. ↑ Simulation of retinitis pigmentosa
  7. ↑ Simulation of macular degeneration
  8. ↑ PRO RETINA Foundation in JOURNAL MED from February 2, 2011
  9. ↑ Report on the establishment of the endowed professorship in Augenspiegel 12/2010
  10. ↑ Ret-Chip for diagnosing hereditary retinal diseases ( Memento of the original from May 5, 2010 in the Internet Archive ) Info: The archive link was inserted automatically and has not yet been checked. Please check the original and archive link according to the instructions and then remove this notice. @1@ 2Template: Webachiv / IABot / www.blindnews.eu
  11. ↑ Eberhart Zrenner, chairman of the WMB
  12. ^ Bernhard Weber, member of the WMB, Institute for Human Genetics at the University of Regensburg
  13. ↑ Patient registry
  14. ↑ Patient consultation hours at the University Eye Clinic Bonn
  15. ↑ Patient consultation hours in the Augen-Zentrum-Nordwest, Ahaus  ( page no longer available , search in web archives )  Info: The link was automatically marked as defective. Please check the link according to the instructions and then remove this notice.@1@ 2Template: Toter Link / www.augen-zentrum-nordwest.de  
  16. ↑ Patient consultation hours in the Clinic for Ophthalmology at the University Hospital of Münster
  17. ↑ Patient consultation hours in the University Eye Clinic Tübingen
  18. ^ Ulrich Kellner in the Siegburg Eye Center
  19. ↑ Retina aktuell - the club magazine from PRO RETINA Deutschland e. V.
  20. ^ AMD Alliance
  21. ↑ AMD Netz ( Memento of the original from December 21, 2012 in the Internet Archive ) Info: The archive link was inserted automatically and has not yet been checked. Please check the original and archive link according to the instructions and then remove this notice. @1@ 2Template: Webachiv / IABot / www.amd-netz.de
  22. ↑ Federal Competence Center for Accessibility
  23. ↑ PRO RETINA Germany e. V. As a voting corporate member of the DBSV
  24. ↑ Joint Technical Committee for the Matters of the Visually Impaired (FBS) ( Memento of the original from August 21, 2012 in the Internet Archive ) Info: The archive link was automatically inserted and not yet checked. Please check the original and archive link according to the instructions and then remove this notice. @1@ 2Template: Webachiv / IABot / www.dbsv.org
  25. ↑ Founded in Great Britain in 1979 as an umbrella organization of 33 national self-help associations, see also Weblinks.