Pro Retina Deutschland

What Pro Retina Deutschland does

PRO RETINA Deutschland e.V. is a German non-profit self-help organization (eingetragener Verein) founded in 1977 and headquartered in Bonn, serving people affected by retinal degenerations including retinitis pigmentosa, macular degeneration, Usher syndrome, and other inherited or acquired retinal conditions. The organization operates a Germany-wide network of 50+ regional and state groups (Landesgruppen) covering all 16 federal states, providing counseling, peer support, condition-specific working groups, assistive device guidance, and patient advocacy through an EUTB (independent participation counseling) service.

Its service portfolio consists of a Beratungsfinder (consultation finder) for matching patients with advisors, a member portal (PRO RETINA +), a peer connection platform (retina connect), a Patientenregister (patient registry) supporting clinical research, a 'Blind verstehen' podcast, and comprehensive educational materials on retinal diseases, genetic diagnostics, and therapies. The digital platform includes accessibility-first features such as adjustable font sizes, dyslexia-friendly typography (Lexend, Atkinson Hyperlegible), ReadSpeaker text-to-speech integration, and customizable display settings tailored to visually impaired users. Annual patient symposiums ('Kenne Dein Gen') connect members with academic researchers.

The organization's revenue model is multi-stream: recurring annual membership fees from affected individuals, family members, and supporting members (Fördermitglieder); one-time and legacy donations; and grants/sponsorship from foundations and health insurers including Aktion Mensch (core partner), DAK Gesundheit, Kämpgen-Stiftung, TK Die Techniker, and the NRW state inclusion initiative. Governance is exercised through a board led by Chairman Stefan Küster, a Mitgliederversammlung, Delegiertenversammlung, and Kuratorium, with no external parent or equity ownership.

Name

Pro Retina Deutschland

Legal name

PRO RETINA Deutschland e. V.

Website

https://pro-retina.de

Company type

Private

Founded year

1977

Operating status

Operating

Headcount range

11–50 employees

Short description

PRO RETINA Deutschland is a Bonn-based non-profit self-help organization founded in 1977, serving people affected by retinal degenerations across Germany through a 50+ regional group network, counseling services, a patient registry, and digital member platforms funded by memberships, donations, and foundation grants.

Ownership category

akta.pro rank

Headquarters

HQ city

Bonn

HQ country

Germany

HQ region

Europe

Offices1 record

Markets served

GTM type

B2C

Offering type

Services

Cost components

Personnel, Operations, Marketing or Sales, Others

Revenue model

1. Membership Fees: Annual membership fees from affected individuals, family members of affected children, relatives, and supporting members. Various membership types available.
2. Donations: One-time and recurring donations from members, supporters, and the public. Includes legacy/bequest donations.
3. Sponsorship and Grants: Funding from foundations and organizations including Aktion Mensch, DAK Gesundheit, Kämpgen-Stiftung, TK Die Techniker, and state initiatives like NRW inklusiv.

Pricing tiers

Go-to-market motion1 record

Distribution channels4 records

Marketing channels7 records

Core offering

PRO RETINA Deutschland is a nonprofit self-help association that supports people affected by retinal degenerations through condition-specific counseling, peer support groups, and disease information across Germany. Its offerings include a Beratungsfinder consultation-matching service, EUTB independent participation counseling, the retina connect contact platform, a patient registry for research, an information-materials program, the "Blind verstehen" podcast, the PRO RETINA+ members-only area, and a nationwide network of regional groups.

Product overview

PRO RETINA Deutschland is a self-help organization (Selbsthilfevereinigung) for people with retinal degenerations, not a technology product company. Its offerings consist of support services, information resources, and community platforms including: the Beratungsfinder (consultation finder) for matching patients with advisors, the EUTB independent participation counseling service, the retina connect contact platform, the PRO RETINA+ members area, informational materials (brochures, flyers), a patient registry for research, a podcast series 'Blind verstehen', and a network of regional groups across Germany. These are service-oriented offerings for patient support rather than software products.

Differentiator

Problem solved

Functional benefit

Brands

• PRO RETINA +: The member area of PRO RETINA offering exclusive content and services for members.
• retina connect

Products and services

• Beratungsfinder (Consultation Finder) Online consultation-matching service that helps users find the right contact person for their specific retinal disease, life situation, or location by filtering advisors by disease, life topic, and geography. Targeted at people with retinal degenerations and their families.
• EUTB (Ergänzende unabhängige Teilhabeberatung) Independent participation counseling service that supports and advises all people with disabilities on questions of rehabilitation, participation, and inclusion. Targeted at people with disabilities, including those with retinal degenerations.
• retina connect (Contact Platform) Contact platform that enables exchange and peer connection among members and people affected by retinal diseases. Targeted at affected individuals and families seeking peer-to-peer contact.
• PRO RETINA+ (Member Area) Members-only area of the PRO RETINA website providing exclusive content and services for paying members of the association. Targeted at members of PRO RETINA Deutschland e.V.
• Patientenregister (Patient Registry) Registry of patients with retinal diseases used to support research into retinal degenerations. Targeted at affected individuals who consent to inclusion and at researchers studying retinal diseases.
• Regionalgruppen (Regional Groups Network) Network of state-level (Landesgruppen) and local regional groups covering all 16 German federal states, providing in-person peer support, meetings, and counseling. Targeted at affected individuals and families across Germany.

Segments3 records

Ideal customer profiles3 records

Technology focussed No

API detail

Has API

No

API docs

API detail

Core technology

AI maturity

App detail

Feature3 records

Scale indicators2 records

Recent moves6 records

Expansion highlights5 records

Direct peers

• Retina International: Dublin-based global federation of national patient organizations focused on retinal degenerations; PRO RETINA is a member body and shares the same disease focus, advocacy mission, and research-partnership model.
• Deutscher Blinden- und Sehbehindertenverband (DBSV): German umbrella organization for blind and visually impaired people; competes for members, donations, and policy influence within the same German geography, but operates at a broader visual-impairment scope rather than retina-specific.
• Foundation Fighting Blindness: US-based nonprofit driving research for retinal degenerative diseases; directly comparable mission around retinal disease research funding, patient registries, and condition-specific working groups (RP, Usher, LCA).
• Retina Australia: Australian national organization supporting people with inherited retinal diseases; same disease scope, similar membership/support service model, and research funding role in a single national market.
• RP Society of Canada: Canadian counterpart supporting people with retinitis pigmentosa and related retinal diseases; closely aligned mission, condition-specific peer support, and patient-registry-driven research funding model.

Others

• Aktion Mensch: Germany's largest social funding organization; not a peer in the patient-advocacy sense but PRO RETINA's most important funding partner, listed as a core-tier financial sponsor and therefore a structurally significant ecosystem participant.

Emerging players

• BrightFocus Foundation: US nonprofit funding research on macular degeneration, glaucoma, and Alzheimer's; partly comparable in that AMD — a major PRO RETINA disease focus — is a shared priority, though their model is research-grant-driven rather than patient-support.

Broad incumbents

• Royal National Institute of Blind People (RNIB): UK's largest charity for blind and partially sighted people; significantly larger and broader in scope, but directly comparable as a membership-based advocacy and support-services model in the visual-impairment space.
• European Blind Union (EBU): Brussels-based pan-European federation of national organizations of the blind; structurally comparable as a federation counterpart to Retina International, operating across the same member geographies PRO RETINA could expand into.

Regional players

• Oogfonds (Dutch Eye Foundation): Dutch nonprofit funding eye-health research, treatment, and patient support; closely comparable peer model — membership + donations + research grant-making — operating in a neighboring market rather than Germany directly.

Market position

Strengths5 records

Weaknesses5 records

Competitive moat5 records

Key risks6 records

Key highlights6 records

Customer concentration

• Xx.com/proretinade
• Facebookfacebook.com/proretina

Revenue estimate

Valuation estimate

Number of profiles

Profiles2 records

Funding overview

Funding rounds

Investors

Funding detail is available on the Subscription and Enterprise plan.Contact sales →

M&A

Investments

M&A and investment is available on the Subscription and Enterprise plan.Contact sales →

Frequently asked questions about Pro Retina Deutschland