What DGM does

Deutsche Gesellschaft für Muskelkranke e.V. (DGM) is a German nonprofit self-help organization (eingetragener Verein) headquartered at Im Moos 4 in Freiburg, operating as the largest patient advocacy body in Germany for individuals affected by neuromuscular diseases. Founded in 2004 and serving a population of more than 100,000 affected people, DGM delivers services through a federated structure consisting of a federal headquarters, 16 regional state associations (Landesverbände) covering every Bundesland, 12+ diagnosis-specific groups covering conditions including ALS, SMA, DMD/BMD, CMT/HMSN, FSHD, and others, and over 100 local discussion circles and self-help groups (Gesprächskreise).

The organization's product portfolio centers on patient and family support — social and assistive-device counseling, the Patientenlotse (patient navigation guide), the online DGM-Forum for peer exchange, and family-focused programs including the JungeDGM youth division — alongside knowledge dissemination and research funding via the DGM Kongress, dedicated Patiententage, the Forschungspreise portfolio (Duchenne-Erb, Felix-Jerusalem, Junior, Myositis-Nachwuchs, FSHD-Ulrich-Brodeßer), and a quarterly newsletter. Underlying technology is a Drupal-based website hosted on Hetzner with a CRM developed and maintained by Ecoplan GmbH under GDPR data-processing terms, a twingle GmbH donation platform with PayPal payment integration, and social media presence across YouTube, Facebook, and Instagram.

DGM is funded primarily through membership dues, individual and commemorative donations, gift and corporate giving, public Gemeinschaftsförderung, modest e-commerce sales via the DGM Shop, and tiered event participation fees — for example, the SMA-Symposium 2026 charges €125 for members and €175 for non-members, the Col-VI-MD-Fachtagung 2026 charges €125-€190, and DGM THERAPIEWISSEN KOMPAKT seminars charge €20-€40. Go-to-market is community-led: membership is acquired via website, word-of-mouth, healthcare-provider referrals, and presence at neuromuscular centers, with flagship events sponsored by pharmaceutical partners including Biogen, Novartis, Roche, and Scholar Rock for SMA-related programming. Revenue is not publicly disclosed.

Name

DGM

Legal name

Deutsche Gesellschaft für Muskelkranke e.V.

Website

https://dgm.org

Company type

Private

Founded year

2004

Operating status

Operating

Headcount range

11–50 employees

Short description

DGM is the largest German self-help organization for people with neuromuscular diseases, operating 16 regional state associations, 12+ diagnosis-specific groups, and 100+ local support circles from its Freiburg headquarters. It provides counseling, peer support, professional training, and research funding funded by memberships, donations, event fees, and pharmaceutical sponsorship.

Ownership category

akta.pro rank

Product category

Patient Advocacy and Self-Help Services

NAICS

Voluntary Health Organizations (813212), Civic and Social Organizations (813410), Other Individual and Family Services (624190)

SIC

Services-Social Services (8300), Services-Membership Organizations (8600), Services-Health Services (8000)

akta.pro primary industry

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

Keywords

• Neuromuscular disease support
• Patient self-help organization
• Rare disease advocacy
• Peer support groups
• Neuromuscular research funding

Headquarters

HQ city

Freiburg

HQ country

Germany

HQ region

Europe

Offices5 records

Markets served

GTM type

B2C

Offering type

Services

Cost components

Personnel, Operations, Technology or R&D, Marketing or Sales, Infrastructure, Others

Revenue model

1. Membership dues: DGM generates revenue through annual membership fees from individuals with neuromuscular diseases and their family members. Membership provides access to counseling, support groups, conferences, and the organization's resources.
2. Donations and charitable contributions: The organization receives donations from individuals, commemorative donations (Spenden im Trauerfall), special occasion donations, gift donations (Geschenkspende), and corporate partnerships. Donations are processed through the twingle GmbH platform and PayPal.
3. Shop sales: DGM operates an e-commerce shop selling greeting cards and informational materials. This is a minor revenue stream that also supports the organization's mission.
4. Event participation fees: Fees charged for participation in conferences, symposiums, workshops, and educational events. Examples include the SMA-Symposium (€125-175 for members, €175-60 for youth), Col-VI-Fachtagung (€125-190), and DGM THERAPIEWISSEN KOMPAKT seminars (€20-40).

Pricing tiers

Go-to-market motion1 record

Distribution channels5 records

Marketing channels8 records

Core offering

DGM is Germany's largest nonprofit self-help organization for people with neuromuscular diseases, operating a member-based support ecosystem. It delivers social and assistive-device counseling, diagnosis-specific and regional support groups, professional training seminars, an annual medical congress, research funding and prizes, and community resources spanning over 100 neuromuscular conditions including ALS, SMA, Duchenne/Becker muscular dystrophy, CMT, and FSHD.

Product overview

DGM operates as a comprehensive self-help organization platform for people with neuromuscular diseases. The core offering consists of a multi-channel information and support ecosystem including the main website with disease information, a shop for greeting cards and materials, the DGM Forum for peer exchange, a quarterly newsletter, the DGM Kongress (annual medical congress), and the JungeDGM youth division. The organization also provides specialized services like DGM THERAPIEWISSEN KOMPAKT (professional training webinars) and the DGM Patientenlotse (patient guide service), all coordinated through 16 regional state associations and 12 diagnosis-specific groups covering conditions like ALS, SMA, DMD/BMD, CMT, and others.

Differentiator

Problem solved

Functional benefit

Products and services

• DGM Annual Membership Recurring annual subscription for individuals with neuromuscular diseases and their families, granting access to social counseling, assistive-device consultation, local self-help groups, diagnosis-specific communities, conferences, the DGM-Forum, and the quarterly DGM newsletter.
• DGM Shop E-commerce storefront offering greeting cards and informational materials for supporters of people affected by muscular diseases, supporting the organization's mission as a minor revenue stream.
• DGM THERAPIEWISSEN KOMPAKT Online continuing-education seminar series for physiotherapists, occupational therapists, and speech-language therapists treating neuromuscular conditions, with tiered pricing for DGM members, members of professional associations (DVE, dbl, Physio Deutschland), and non-members.
• DGM Kongress Annual medical congress bringing together national and international experts in neuropediatrics, neurology, neuropathology, genetics, and rehabilitation medicine; the event hosts the presentation of research prizes including the Duchenne-Erb-Preis, Felix-Jerusalem-Preis, Junior-Preis, and Myositis-Nachwuchs-Forschungspreis.
• SMA-Symposium Diagnosis-specific residential symposium for patients with spinal muscular atrophy (SMA) and their families, featuring tiered pricing for DGM members, non-members, youth (13+), and free for children (0-12).
• Col-VI-MD-Fachtagung Specialist conference for Collagen VI muscular dystrophy patients and families featuring tiered pricing for members, non-members, and youth, with a hybrid in-person and online participation option.
• FSHD-Patiententage Patient days for FSHD (facioscapulohumeral muscular dystrophy) including the awarding of the FSHD-Ulrich-Brodeßer-Forschungspreise research prize for outstanding contributions to FSHD research.

Quantifiable outcome

• More than 100,000 people in Germany affected by neuromuscular diseases served

Named customers3 records

Segments3 records

Ideal customer profiles3 records

Technology focussed No

API detail

Has API

No

API docs

API detail

Core technology

AI maturity

App detail

Integration2 records

Partnerships

Ten partnerships are on record, tiered core and minor.

• twingle GmbHcoreTechnology or Integrationtwingle GmbH (Prinzenallee 74, 13357 Berlin) provides the technical platform for DGM's donation processing system. The company stores donation data on servers in Germany and DGM has a data processing agreement with twingle in accordance with GDPR requirements.
• PayPalcoreChannel Partner/ Reseller/ DistributorPayPal is integrated as a payment processor for DGM's donation system, allowing donors to make secure online payments. PayPal handles payment information and transaction processing while DGM stores donor details for issuing donation receipts.
• Hetzner Online GmbHcoreTechnology or IntegrationHetzner (Industriestr. 25, 91710 Gunzenhausen) provides web hosting services for DGM's website and online platforms.
• Ecoplan GmbHcoreTechnology or IntegrationEcoplan GmbH (Justus-Liebig-Straße 6, 36093 Künzell) is the contractor for DGM's CRM system development and maintenance under Art. 28 GDPR data processing agreements.
• BiogenminorGTM or Marketing PartnerBiogen is a pharmaceutical sponsor for the SMA-Symposium 2026, supporting the event financially in exchange for association with the event.
• NovartisminorGTM or Marketing PartnerNovartis is a pharmaceutical sponsor for the SMA-Symposium 2026, supporting the event financially.
• Scholar RockminorGTM or Marketing PartnerScholar Rock is a pharmaceutical sponsor for the SMA-Symposium 2026, supporting the event financially.
• RocheminorGTM or Marketing PartnerRoche is a pharmaceutical sponsor for the SMA-Symposium 2026, supporting the event financially.
• Hotel Franz (Essen)minorOthersHotel Franz in Essen is a recurring venue for DGM NRW regional events including member weekends and Tag der Muskelkranken meetings.
• Neuromuskuläre Zentren (Neuromuscular Centers)coreStrategic or Co-development PartnerDGM works with a network of specialized neuromuscular centers throughout Germany for diagnosis, treatment, and research collaboration.

Scale indicators4 records

Recent moves6 records

Expansion highlights6 records

Direct peers

• NORD (National Organization for Rare Disorders): US-based rare disease umbrella patient advocacy organization operating a similar multi-stakeholder model (patient organizations, research, advocacy, education) with comparable funding mix (memberships, donations, corporate partnerships). Useful global comparable for organizational scale benchmarking.
• Muscular Dystrophy Association (MDA): Direct global peer — the leading US neuromuscular disease patient advocacy organization providing disease information, research funding, clinical care referrals, and community support. Highly comparable in mission, structure (multi-disease umbrella), and revenue model (memberships, donations, sponsored events) to DGM, though operating at much larger scale and across the US.
• Cure SMA: Direct peer — leading US-based SMA patient advocacy organization. Highly relevant given that DGM's SMA-Symposium is its flagship pharma-sponsored event; both organizations occupy the SMA patient-advocacy niche and compete for similar pharma partnerships and donor dollars.
• ACHSE (Allianz Chronischer Seltener Erkrankungen): German umbrella alliance of patient organizations for chronic rare diseases; DGM is a member-type counterpart. Directly comparable as a coordinating body for rare disease advocacy, policy engagement, and patient navigation support in Germany.
• ALS Association: Direct disease-specific peer — the largest US nonprofit dedicated to ALS research, care services, and advocacy. Operates with a similar model (chapters, support groups, research grants, advocacy) and serves a population that overlaps with one of DGM's 12+ diagnosis-specific groups, making the operating playbook highly transferable.
• EURORDIS – Rare Diseases Europe: European umbrella alliance for rare disease patient organizations, of which DGM is a member-type counterpart. Directly comparable as a federation convening disease-specific patient groups across Europe for advocacy, policy, and research funding purposes.
• Treat-NMD: European neuromuscular disease research network and advocacy alliance. Directly comparable as a neuromuscular-specific organization coordinating across academic, clinical, industry, and patient stakeholders for translational research and care standards — overlapping mission with DGM's research funding and congress activities.
• Deutsche Multiple Sklerose Gesellschaft (DMSG): The leading German patient advocacy organization for multiple sclerosis, structurally nearly identical to DGM — German nonprofit, membership-based, 16 regional state associations, professional counseling, research funding, pharma partnerships. Closest German structural and operational peer.

Regional players

• Muskelkrank & Forschung (Swiss neuromuscular patient org equivalents, e.g., Schweizerische Muskelgesellschaft): Swiss counterpart patient organization for neuromuscular diseases. Operates the same essential model (counseling, support groups, research funding, member services) in a neighboring jurisdiction, providing a comparable operating scale and structure for benchmarking.
• Deutsche Gesellschaft für Parkinson und Bewegungsstörungen (dPV / Parkinson-Netzwerke): Another leading German disease-specific patient self-help organization with similar structure (federal headquarters, regional associations, support groups, research funding). Strong German regional peer for benchmarking operating model and scale, though focused on Parkinson's rather than neuromuscular diseases.

Market position

Strengths5 records

Weaknesses5 records

Competitive moat4 records

Key risks6 records

Key highlights7 records

Customer concentration

• YouTubeyoutube.com/@DGM_eV
• Facebookfacebook.com/DeutscheGesellschaftfuerMuskelkranke.DGM
• Instagraminstagram.com/dgm_ev

Revenue estimate

Valuation estimate

Number of profiles

Profiles1 record

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 DGM