MaculaVereniging

What MaculaVereniging does

MaculaVereniging is a Dutch patient association (vereniging) founded in 2000 and headquartered in Haarlem, Netherlands, dedicated exclusively to supporting people with macular degeneration (MD) and their families. The organization serves individuals with age-related macular degeneration (LMD) and juvenile macular degeneration (JMD), as well as partners, parents, and caregivers, addressing information gaps, social isolation, and the absence of disease-specific peer support in the Dutch healthcare landscape. It operates as a non-profit with ANBI (Algemeen Nut Beogende Instelling) charitable status (RSIN 809291460), is staffed by approximately 5 employees, and is supported by an extensive volunteer network including the volunteers who staff the Macula-Infolijn telephone helpline.

The association's core offerings include the quarterly MaculaVisie magazine delivered in four accessible formats (digital, black print, Daisy-CD, and Webbox); the online Macula Risicotest, an interactive four-factor risk assessment for MD; a free postal Amsler grid self-test program; the Ogenblikje podcast series; a recurring webinar program featuring senior Dutch ophthalmologists; a monthly email newsletter; and patient guides including 'Maculadegeneratie: hoe nu verder?' and the annual 'Macula Maga(minder)Zien' special publication. Member services also include the Macula-Infolijn and a national network of peer support meetings (Macula cafés and Oog & Macula-bijeenkomsten) at 32+ Dutch locations, supplemented by specialized JMD network meetings in at least 8 cities. The organization has no proprietary technology platform; its website (maculavereniging.nl) is the primary digital hub for membership enrollment, donations, publication downloads, and webinar registration.

Revenue is derived primarily from annual membership fees at €32.50 per member (auto-renewed each calendar year, with an optional €10/year add-on for a second reading format), supplemented by one-time donations, periodic gifts (periodieke schenking), and legacy bequests (testament). The organization maintains research and content partnerships with major Dutch academic medical centers (Amsterdam UMC, Radboudumc, Erasmus MC, Leiden UMC) and with the Netherlands Institute for Health Services Research (Nivel), the rehabilitation centers Bartiméus and Koninklijke Visio, the Oogvereniging, the Oogfonds, and Stichting InZicht. It previously operated under the name 'MD Vereniging' before rebranding to MaculaVereniging in 2015.

Name

MaculaVereniging

Legal name

MaculaVereniging

Website

https://maculavereniging.nl

Company type

Private

Founded year

2000

Operating status

Operating

Headcount range

1–10 employees

Short description

MaculaVereniging is a Dutch non-profit patient association founded in 2000 that supports people with macular degeneration (LMD and JMD) and their families through accessible publications, an information helpline, podcasts, webinars, and a peer support network at 32+ locations across the Netherlands.

Ownership category

akta.pro rank

Product category

Patient Advocacy Services

NAICS

Services for the Elderly and Persons with Disabilities (624120), Individual and Family Services (6241)

SIC

Services-Membership Organizations (8600)

akta.pro primary industry

Disease-Specific Research & Support (e.g., Cancer, Diabetes, ALS) (BPAGACAA)

akta.pro secondary industry

Disability Services & Independent Living Support (BPAGACAG)

Keywords

• Patient advocacy services
• Macular degeneration information
• Peer support meetings
• Accessible healthcare publications
• Patient association membership

Headquarters

HQ city

Haarlem

HQ country

Netherlands

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 provide core revenue. Membership costs €32.50 per year, runs for the calendar year, and is automatically renewed. The membership includes the digital version of the MaculaVisie newsletter and one optional alternative reading format (second reading format costs €10/year extra).
2. Donations and legacies: The organization accepts one-time donations, periodic gifts (periodieke schenking), and legacy bequests (testament). These are flagged under the 'Help mee' (Help us) section of the website.

Pricing tiers

Distribution channels4 records

Marketing channels9 records

Core offering

MaculaVereniging is a Dutch patient association that provides information, support, and advocacy services to people with macular degeneration (MD) and their families in the Netherlands. Its paid offering is annual membership (€32.50 per calendar year) which includes the digital MaculaVisie magazine in one accessible reading format, with an additional €10/year option for a second reading format. The association delivers a free Amslerraster self-test by post, runs an information helpline (Macula-Infolijn), organizes peer support meetings at 32+ locations, and publishes guides, podcasts, webinars, and a monthly newsletter. It also accepts donations and legacy gifts as a registered ANBI charity.

Product overview

MaculaVereniging is a Dutch patient association for people with macular degeneration (MD) and their relatives, offering a comprehensive suite of information services, self-assessment tools, and community support. The core offerings include MaculaVisie (quarterly magazine in multiple accessible formats), the Macula Risicotest (online risk assessment), the Amslerraster (self-testing grid for vision monitoring), the Ogenblikje podcast series, webinar programs, and the monthly Nieuwsbrief newsletter. The association publishes educational guides including 'Macula-degeneratie en hoe nu verder?', 'Macula Maga(minder)Zien' annual specials, and nutrition-focused publications like 'Het oog wil ook wat'. Member support services include the Macula-Infolijn telephone helpline, peer support meetings (Macula-cafés) at 32+ locations, and specialized JMD network meetings for juvenile macular degeneration patients. The organization operates as a charity (ANBI status) with annual membership at €32.50.

Differentiator

Problem solved

Functional benefit

Products and services

• MaculaVisie quarterly magazine Quarterly information magazine for people with macular degeneration, their partners, family members, and hereditary carriers. Delivered in multiple accessible formats (digital, black print, Daisy-CD, Webbox); one format is included in annual membership, with a second format available for an additional €10/year.
• Macula Risicotest (online risk assessment) Interactive online questionnaire that evaluates four risk factors (age, family history, smoking, diabetes) to determine whether a user has elevated risk for macular degeneration. Free to use on the MaculaVereniging website; serves as a top-of-funnel engagement tool for prospective members.
• Amslerraster (Amsler Grid) self-test card Free self-testing tool based on the 1945 Amsler grid for detecting vision changes suggestive of macular degeneration. MaculaVereniging offers free downloadable/orderable versions for regular home self-monitoring of central vision; new newsletter subscribers receive one free of charge.
• Ogenblikje Podcasts Podcast series with conversations about macular degeneration covering patient experiences, medical information, lifestyle advice, and expert interviews with ophthalmologists. Free access via the MaculaVereniging website; topics include dry/wet MD, eye injections, Stargardt disease, lifestyle, and AI in ophthalmology.
• Webinars (expert-led virtual sessions) Free, virtual webinar program with Dutch ophthalmology experts on macular degeneration topics including treatment options, Stargardt disease, and living with MD. Recordings of past sessions are available on the website.
• Nieuwsbrief (monthly newsletter) Monthly email newsletter providing updates on macular degeneration treatments, research, practical tips, upcoming events, and includes a complimentary Amsler grid for new subscribers.
• Gesprekshulp voor bij de oogarts (Conversation Guide) Guide developed to support patients with age-related macular degeneration in conversations with their ophthalmologist, including practical sample questions. Co-developed with Nivel and Amsterdam UMC.
• Macula Maga(minder)Zien (annual publication special) Annual special publication focusing on specific aspects of macular degeneration; the fourth edition is dedicated to juvenile macular degeneration (JMD).
• Maculadegeneratie en hoe nu verder? (patient guide) Comprehensive guide for patients covering all aspects of living with macular degeneration; provided as part of the welcome package for new members.
• Het oog wil ook wat (recipe book) Inspirational cookbook combining practical and scientific sections on nutrition for eye health, published for Macula Month in collaboration with Oogfonds.
• Geef uw ogen goede kost (nutrition recipe book) Special publication on nutrition and recipes that positively influence eye health and may slow MD progression, published for the association's 10th anniversary in collaboration with Oogfonds.
• Macula-Infolijn (information helpline) Information hotline and email support service staffed by trained volunteers answering questions about macular degeneration and visual aids. Available weekdays 09:00–17:00 at 030-298 07 07 and [email protected].
• Macula-cafés & Oog & Macula-bijeenkomsten (peer support meetings) Local peer support meetings organized at 32+ locations across the Netherlands where people with macular degeneration exchange experiences and tips, sometimes featuring guest speakers on visual aids. Co-organized at multiple locations with the Oogvereniging.
• JMD-netwerkbijeenkomsten (juvenile MD network meetings) Specialized network meetings for people with Juvenile Macular Degeneration (JMD) covering topics such as study, work, aids, apps, sports, travel, and mobility; held in at least 8 Dutch cities.

Segments2 records

Ideal customer profiles2 records

Technology focussed No

API detail

Has API

No

API docs

API detail

Core technology

AI maturity

App detail

Partnerships

14 partnerships are on record, tiered minor and core.

• Camiel Boon (Amsterdam UMC / Leiden UMC)minorStrategic or Co-development PartnerProf. Camiel J.F. Boon, professor of ophthalmology at Amsterdam UMC and Leiden UMC, has delivered webinars for the MaculaVereniging on new treatment possibilities for macular degeneration. His research focuses on hereditary and degenerative eye diseases.
• Yara Lechanteur (Radboudumc / Radboud Universiteit)minorStrategic or Co-development PartnerDr. Yara Lechanteur, MD PhD, ophthalmologist specializing in medical retina and glaucoma at Radboudumc, has delivered a webinar on a critical view of the latest treatments. She combines clinical care with scientific research aimed at developing new diagnostic and treatment methods.
• Hans Vingerling (Erasmus MC / Nederlands Oogheelkundig Gezelschap)minorStrategic or Co-development PartnerProf. Johannes (Hans) R. Vingerling, professor of ophthalmology at Erasmus MC and chairman of the Nederlands Oogheelkundig Gezelschap (Dutch Ophthalmological Society), has delivered a webinar on 'Maculadegeneratie, wat nu?'.
• Carel Hoyng (Radboudumc)minorStrategic or Co-development PartnerProf. Carel B. Hoyng, professor of ophthalmology at Radboudumc with the chair for macular degeneration, is a leading international researcher on MD and genetic eye diseases. He has delivered webinars on Stargardt disease (JMD) and contributed to a special publication on nutritional supplements.
• Caroline Klaver (Erasmus MC / Radboudumc / University of Basel)minorStrategic or Co-development PartnerProf. dr. Caroline C.W. Klaver, ophthalmologist, epidemiologist, and professor of genetics and epidemiology of eye diseases at Erasmus MC, Radboudumc, and University of Basel, has delivered webinars and contributed to publications on myopia and its connection to MD.
• Bert van der Pol (University Medical Center Groningen)minorStrategic or Co-development PartnerBert A.E. van der Pol, ophthalmologist formerly affiliated with UMC Groningen, has delivered a webinar ('Oogarts, vertel mij eens') and contributed to education and quality improvement in Dutch eye care.
• Nivel (Netherlands Institute for Health Services Research)coreStrategic or Co-development PartnerThe Nivel collaborated with Amsterdam UMC and the MaculaVereniging on the 'Maculadegeneratie: wat nu?' guide — a patient conversation support tool developed in the Nivel's research practice, commissioned by Stichting InZicht.
• Amsterdam UMCcoreStrategic or Co-development PartnerAmsterdam UMC co-developed the 'Maculadegeneratie: wat nu?' patient guide with Nivel and the MaculaVereniging, commissioned by Stichting InZicht.
• BartiméuscoreImplementation/ SI/ Consulting PartnerBartiméus is a Dutch center for visual rehabilitation with showrooms in several locations. The MaculaVereniging refers members to Bartiméus for advice on aids and devices (reading aids, magnifiers, speaking appliances, training). Bartiméus also offers training in the use of aids.
• Koninklijke VisiocoreImplementation/ SI/ Consulting PartnerKoninklijke Visio is a Dutch national center for visual rehabilitation with showrooms where people with MD can explore and test aids. The MaculaVereniging refers members to Visio for device advice, training, and rehabilitation services. Visio also runs inloopdagen (open days).
• Iris HuysminorImplementation/ SI/ Consulting PartnerIris Huys is a Dutch supplier of aids for blind and visually impaired people, specializing in products from magnifiers and speaking devices to tactile household appliances and lighting. Owner Edwin Prosman has presented at MaculaVereniging webinars.
• Oogvereniging (Eye Association)minorStrategic or Co-development PartnerThe MaculaVereniging co-organizes Oog & Macula-bijeenkomsten (Eye & Macula meetings) with the Oogvereniging at multiple Dutch locations.
• Oogfonds (Eye Fund)minorOthersThe Oogfonds is a Dutch eye health foundation referenced by the MaculaVereniging as a source for nutrition guidelines and recipe materials (e.g., 'Het oog wil ook wat' recipe booklet).
• Stichting InZichtcoreOthersStichting InZicht commissioned the Nivel, in collaboration with Amsterdam UMC and the MaculaVereniging, to develop the 'Maculadegeneratie: wat nu?' patient guide.

Scale indicators4 records

Recent moves6 records

Expansion highlights5 records

Direct peers

• Fighting Blindness: Irish patient-led charity funding research and providing support for people affected by sight loss from retinal and other degenerative eye conditions. Directly comparable as a national retinal-disease advocacy and support organization.
• Retina International: Umbrella patient advocacy organization for retinal diseases including macular degeneration, with member organizations across Europe and globally. Directly comparable as a disease-area patient advocacy body focused on inherited and age-related retinal conditions.
• BrightFocus Foundation: US nonprofit that funds research and provides public education on macular degeneration, glaucoma, and Alzheimer's. Overlaps directly with MaculaVereniging's information-and-advocacy model for macular degeneration specifically.
• Oogvereniging: The Dutch national eye patient association covering all eye conditions; MaculaVereniging explicitly co-organizes 'Oog & Macula-bijeenkomsten' with them at multiple Dutch locations. They are direct peers in Dutch patient advocacy for visual impairment, with MaculaVereniging specializing exclusively in macular degeneration.
• Retina UK: UK charity for people with inherited and age-related retinal conditions, providing information, support, and research funding. Same disease category (retinal/MD) with a comparable information-plus-peer-support model to MaculaVereniging.
• AMD Alliance International: International coalition dedicated specifically to age-related macular degeneration awareness, education, and advocacy. A direct peer operating at a global level on the same single-disease advocacy remit that MaculaVereniging executes nationally in the Netherlands.

Regional players

• American Macular Degeneration Foundation: US nonprofit focused on macular degeneration awareness, research funding, and patient support. Mirrors MaculaVereniging's mission and information-service model but in the US market.
• Macular Disease Foundation Australia: Australian charity dedicated exclusively to macular disease, providing education, information, and support services for people with MD. Closely comparable mission and service model to MaculaVereniging, but operating in a different geography.

Others

• Koninklijke Visio: Dutch national center for visual rehabilitation where MaculaVereniging formally refers members for aids and training. Not a peer in advocacy but an adjacent ecosystem partner serving the same patient population via rehabilitation services.
• Oogfonds: Dutch eye health foundation referenced by MaculaVereniging for nutrition and recipe publications. Adjacent rather than competing — focuses on research funding and general eye health awareness across all conditions rather than MD-specific peer support.

Market position

Strengths5 records

Weaknesses5 records

Competitive moat5 records

Key risks6 records

Key highlights7 records

Customer concentration

• Facebookfacebook.com/MaculaVereniging
• LinkedInlinkedin.com/company/macula-vereniging-nederland
• Instagraminstagram.com/maculavereniging

Compliance1 record

Revenue estimate

Valuation estimate

Number of profiles

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 MaculaVereniging