PRO RETINA Deutschland e. V.

PRO RETINA Deutschland e.V. is a national self-help organization that has been committed to people with genetic retinal diseases since its founding in 1977. Originally established as the German Retinitis Pigmentosa Association, PRO RETINA now supports individuals affected by all types of retinal diseases, including Retinitis Pigmentosa, Usher Syndrome, Macular Degeneration, and rarer conditions such as Atrophia Gyrata, Bardet-Biedl Syndrome, and Leber's Congenital Amaurosis[2].

• Consultation and Support: PRO RETINA offers comprehensive consultation and support for those affected and their relatives. Volunteer advisors, who are themselves affected by the diseases, are regularly trained and educated to provide competent assistance in all matters related to diagnosis and living with the condition[5].
• Regional Groups: With about 50 regional groups spread across Germany, PRO RETINA enables members to network locally and support each other[1].
• Research Promotion: A central goal of PRO RETINA is to promote research to enable therapies and cures for retinal diseases. The organization works closely with scientists, clinics, and experts to initiate and support research projects and therapy trials[2][5].
• Patient Consultation: In cooperation with the University Eye Clinic Bonn, PRO RETINA operates a patient consultation service based on the experiences and needs of those affected[2].

The main mission of PRO RETINA is to help people with retinal diseases cope with their condition and lead an independent life. The organization advocates for the promotion of research and the improvement of medical care to enable effective therapies and cures in the long term. PRO RETINA represents the interests of those affected in medicine, research, and rehabilitation and is registered in the lobby register of the German Bundestag[5].

• Transparency and Self-Commitment: As a member of the Federal Working Group on Self-Help, PRO RETINA publishes an annual self-disclosure about income from cooperation with business enterprises to promote transparency and trust[4].
• Support through Donations and Grants: PRO RETINA is supported by donations, grants from health insurance companies, and other funding. These funds are used to finance the training of advisors, research projects, and the general work of the organization[4][5].
• Voluntary Engagement: The work of PRO RETINA thrives on the voluntary commitment of its members and supporters. The organization offers many opportunities to engage voluntarily and make a difference in the community[3].

PRO RETINA Deutschland e.V. is a vibrant community that tirelessly advocates for the concerns of people with retinal diseases. Through its comprehensive services, research promotion, and voluntary engagement, the organization helps those affected to lead an independent and fulfilling life.

• 1 - https://retina-international.org/members/pro-retina-deutschland-e-v/
• 2 - https://www.achse-online.de/de/Mitgliederverzeichnis/M1441/PRO_RETINA_Deutschland_e_V
• 3 - https://www.pro-retina.de
• 4 - https://www.pro-retina.de/pro-retina/selbstauskunft
• 5 - https://www.pro-retina.de/pro-retina/spenden/ihre-spende-schenkt-zuversicht