Deutsche Patientenorganisation Angeborene Immundefekte

What Deutsche Patientenorganisation Angeborene Immundefekte does

Deutsche Patientenorganisation Angeborene Immundefekte (dsai e.V.) is a German non-profit patient organization (eingetragener Verein) supporting people with primary immunodeficiencies (PID), autoinflammatory diseases, and — in an active expansion — secondary immunodeficiencies (SID). Founded in 1989 and headquartered in Germany with approximately 1-10 employees, dsai operates a community-led model centered on counseling, peer exchange, regional groups, family weekends, virtual Stammtisch meetups, and public awareness campaigns. Its service portfolio spans patient-facing tools (the Immun-Check online self-assessment at mach-den-immuncheck.de, newsletters, brochures, Ratgeber guidebooks, Notfallausweis emergency IDs, podcasts, digital patient evenings) and physician-facing programs (certified Ärztliche Fortbildungen CME training and the Erstdiagnose Autoinflammation guidebook), with content aligned to the S3-AWMF-Leitlinie 189-0031 for autoinflammatory diseases.

The organization's business model is a non-profit funding stack: membership fees, donations, public grants, and pharmaceutical partner support for specific educational programs. All services are provided free of charge to patients and families; the physician training channel additionally offers an exhibitor area (Ausstellerbereich), creating an industry-sponsorship revenue path. Distribution is hybrid, combining national reach (website, social media, newsletter, press coverage including NDR's Abenteuer Diagnose) with regional in-person infrastructure and member-only digital channels such as forum.dsai.de.

dsai holds strategic affiliations with EURORDIS, ACHSE, IPOPI, the Jeffrey Modell Foundation, FIND-ID (Ärztenetzwerk), B.A.G. Selbsthilfe, Kindernetzwerk, and PersAIDS (an EU project on personalized medicine for autoinflammatory diseases, represented by Sandra Lopes and Andrea Maier-Neuner). Key patrons include Michaela Schaffrath and Thorsten Havener. Sandra Lopes serves as the dedicated contact person for autoinflammation. Founded-date sources show minor inconsistency (1989 vs. 1991) and the scale commentary references both "30 years celebrated in 2021" and "35 years in 2021," which this description treats as a data inconsistency rather than a resolved fact.

Name

Deutsche Patientenorganisation Angeborene Immundefekte

Legal name

dsai e.V. Patientenorganisation für angeborene Immundefekte

Website

https://dsai.de

Company type

Private

Founded year

1989

Operating status

Operating

Headcount range

1–10 employees

Short description

dsai e.V. is a German non-profit patient organization (founded 1989, 1-10 employees) that supports people with primary immunodeficiencies, autoinflammatory diseases, and (newly) secondary immunodeficiencies through counseling, regional groups, certified physician training, and educational publications.

Ownership category

akta.pro rank

Product category

Non-Profit Patient Advocacy Services

NAICS

Voluntary Health Organizations (813212), Individual and Family Services (6241)

SIC

Services-Social Services (8300)

akta.pro industry

PRIMARYBPAGACAG

Disability Services & Independent Living Support

Business & Public Services/Nonprofit, NGO & Social Services/Health & Medical Nonprofits

SECONDARYBPAGALAM

Disability Services & Assistive Solutions (Accessibility, Assistive Tech)

Business & Public Services/Nonprofit, NGO & Social Services/Social Enterprises & Impact Organizations

Keywords

• Patient organization services
• Immunodeficiency support
• Autoinflammatory disease resources
• Medical education programs
• Patient advocacy community

Headquarters

HQ city

Berlin

HQ country

Germany

HQ region

Europe

Offices1 record

Markets served

GTM type

B2C

Offering type

Services

Cost components

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

Revenue model

1. Membership fees and donations: As a non-profit patient organization (e.V.), dsai operates primarily through membership fees, donations, and public funding. Services are provided free of charge to patients and families. The organization also receives support from pharmaceutical partners for specific educational programs.

Go-to-market motion1 record

Distribution channels4 records

Marketing channels9 records

Core offering

dsai is a non-profit patient organization that provides free support, counseling, and community exchange for people affected by primary immunodeficiencies, autoinflammatory diseases, and (newly) secondary immunodeficiencies. Its core offerings include the Immun-Check self-assessment tool, certified medical training for physicians, disease-specific publications (brochures, guidebooks, emergency IDs), a podcast, digital patient evenings, virtual Stammtisch meetings, family exchange weekends, and nationwide regional groups. All services are provided at no cost to patients and families, funded through membership fees, donations, and public/pharmaceutical support.

Product overview

Deutsche Patientenorganisation Angeborene Immundefekte (dsai e.V.) is a non-profit patient organization offering a unified portfolio of support services, publications, and educational programs for patients with primary immunodeficiencies (PID) and autoinflammatory diseases. The core offerings include the Immun-Check self-assessment tool, regular newsletters, medical brochures and guidebooks (including the dsai-Ratgeber for initial diagnosis of autoinflammation), emergency IDs, certified medical training for physicians, podcasts, digital patient evenings with medical lectures, online Stammtisch meetings for autoinflammation patients, and family exchange weekends. The organization serves both patients and healthcare professionals through a combination of digital tools, printed materials, and community events.

Differentiator

Problem solved

Functional benefit

Products and services

• Immun-Check
• dsai Newsletter
• Broschüren und Flyer (Brochures and Flyers)
• Ratgeber (Guidebooks)
• Notfallausweis (Emergency ID)
• Zertifizierte Ärztliche Fortbildungen (Certified Medical Training)
• Podcast dsai
• Digitaler Patientenabend (Digital Patient Evening)
• Online-Stammtisch Autoinflammation
• Austausch-Wochenenden für Familien (Family Exchange Weekends)
• Fachvorträge (Medical Lectures)

Named customers3 records

Segments4 records

Ideal customer profiles3 records

Technology focussed No

API detail

Has API

No

API docs

API detail

Core technology

AI maturity

App detail

Partnerships

13 partnerships are on record, tiered core, major and minor.

• PersAIDS (Personalized Medicine for Systemic Autoinflammatory Diseases)coreStrategic or Co-development Partner · 1 January 2023EU project focused on personalized medicine for autoinflammatory diseases. dsai is represented by Sandra Lopes and Andrea Maier-Neuner, contributing patient perspectives and networking across Europe and globally to improve care.
• EURORDISmajorOthersEuropean rare disease organization. dsai is a member, providing international representation and access to European rare disease networks and advocacy.
• ACHSE (Allianz Chronischer Seltener Erkrankungen)majorOthersAlliance for chronic rare diseases in Germany. dsai is a member, contributing to the German rare disease community and advocacy efforts.
• IPOPI (International Patient Organisation for Primary Immunodeficiencies)coreStrategic or Co-development PartnerInternational primary immunodeficiency organization. dsai represents German patients internationally and participates in global advocacy and awareness.
• B.A.G. Selbsthilfe (Bundesarbeitsgemeinschaft Selbsthilfe)majorOthersFederal working group for self-help organizations in Germany. dsai adheres to B.A.G. principles for transparency and independence.
• JMF (Jeffrey Modell Foundation)coreStrategic or Co-development PartnerInternational immunodeficiency foundation focused on diagnosis and treatment. dsai collaborates on awareness and support initiatives.
• FIND-ID (Ärztenetzwerk)coreTechnology or IntegrationPhysician network for immunodeficiency. dsai collaborates on medical publications and educational materials for physicians, including the autoinflammatory diseases brochure.
• University Hospitals (Unikliniken)coreStrategic or Co-development PartnerMedical cooperation partners from university hospitals who participate in dsai's certified physician education programs and contribute to autoinflammation awareness.
• Michaela Schaffrath (Patron)minorOthersPatron supporting dsai's mission and raising public awareness for immunodeficiency and autoinflammatory diseases.
• Thorsten Havener (Patron)minorOthersPatron supporting dsai's mission and raising public awareness for immunodeficiency and autoinflammatory diseases.
• Sandra Lopes (Autoinflammation Contact Person)coreOthersMother of a daughter with autoinflammatory disease, serves as dsai's primary contact for autoinflammation topics. Leads family weekends, online meetups, and represents dsai in medical guidelines and EU projects.
• Pro Immun e.V.minorOthersGerman patient organization for immunodeficiency. dsai maintains connection as part of the broader immunodeficiency patient advocacy community.
• Kindernetzwerk e.V.minorOthersChildren's network organization. dsai is a member, connecting with broader child health and disability advocacy networks.

Scale indicators2 records

Recent moves6 records

Expansion highlights5 records

Broad incumbents

• EURORDIS (European Organisation for Rare Diseases): European-level umbrella for rare disease patient organizations. dsai is a member; EURORDIS provides cross-disease advocacy infrastructure and policy access that complements dsai's disease-specific work but competes for the same donor and policy attention.
• ACHSE (Allianz Chronischer Seltener Erkrankungen): German umbrella alliance for chronic rare disease patient organizations. dsai is a member; ACHSE coordinates collective advocacy on behalf of all rare disease communities in Germany, making it both an enabler and a competitor for influence.

Direct peers

• Pro Immun e.V. German patient organization for immunodeficiency explicitly referenced in dsai's partnership data as part of the same advocacy community. Both serve PID patients in Germany with overlapping educational and self-help mandates, making them the closest direct domestic peer.
• IPOPI (International Patient Organisation for Primary Immunodeficiencies): The international umbrella patient organization for primary immunodeficiencies. dsai is a member and acts as Germany's national affiliate; both serve the same PID patient community with education, advocacy, and physician engagement, differing mainly in geographic scope.
• Jeffrey Modell Foundation (JMF): Global foundation focused on diagnosis and treatment of primary immunodeficiencies. dsai explicitly lists JMF as a core strategic partner; both organizations pursue overlapping missions of physician training, awareness, and patient support for the same disease area.

Regional players

• Kindernetzwerk e.V. German children's network organization that dsai is a member of. Both serve pediatric chronic-illness advocacy and family support audiences in Germany, with partial overlap in pediatric immunodeficiency and autoinflammatory disease communities.
• NORD (National Organization for Rare Disorders): US-based umbrella organization for rare diseases analogous to ACHSE in Germany. Operates a comparable patient advocacy, awareness, and research-funding model for the broader rare disease population, useful as a benchmark for program design and scale.
• Immune Deficiency Foundation (IDF): US-based national patient organization for primary immunodeficiencies. Operates the same patient-advocacy-plus-physician-education model for PID patients in the United States, making it a strong functional analog even though it does not compete in dsai's German market.

Others

• B.A.G. Selbsthilfe (Bundesarbeitsgemeinschaft Selbsthilfe): Federal working group for German self-help organizations to which dsai adheres for transparency and independence standards. Functions as an umbrella and industry association rather than a competitor, but shapes the operating framework for organizations like dsai.

Emerging players

• Autoinflammation Network e.V. Emerging German patient/community organization focused specifically on autoinflammatory diseases, the same expansion vertical dsai is investing in. Represents a potential niche competitor for donor attention, member growth, and physician network influence within autoinflammation.

Market position

Strengths5 records

Weaknesses5 records

Competitive moat5 records

Key risks6 records

Key highlights7 records

Customer concentration

• YouTubeyoutube.com/channel
• Xx.com/pid_dsai
• LinkedInlinkedin.com/company/immundefekte-patientenorganisation

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 Deutsche Patientenorganisation Angeborene Immundefekte