Pro Rare Austria
Pro Rare Austria is a Vienna-based non-profit umbrella organization coordinating advocacy, networking, and support services for rare disease self-help groups in Austria, representing 98 member organizations and serving approximately 450,000 affected individuals.
- Company typePrivate
- Founded2012
- HeadquartersVienna, Austria
- Headcount1–10
- GTM typeB2C
- OfferingServices
What Pro Rare Austria does
Pro Rare Austria (legal name: Pro Rare Austria, doing business as 'Allianz für seltene Erkrankungen' / Alliance for Rare Diseases) is a Vienna-based non-profit association (Verein) founded around 2012, registered in Austria under ZVR 066216826. The organization functions as a national umbrella and patient advocacy alliance for the approximately 450,000 people in Austria affected by rare diseases — a population spread across more than 6,000 known conditions, roughly 70% of which manifest in childhood. As of October 2023, Pro Rare Austria counted 98 member organizations, comprising both disease-specific patient groups and individual affected persons. Its headquarters are located at Schottenring 14, 1010 Vienna, and the office is barrier-free accessible by appointment.
The organization delivers services through a Helpline for rare diseases (service hours Monday–Thursday 10:00–15:00), structured networking events including the annual Vernetzungstreffen and the Austrian Congress for Rare Diseases, Rare Disease Day activities, and educational content distributed via website, newsletter, Facebook, YouTube, and press relations. Underlying technology is a content/website platform for information dissemination and member services; no proprietary software products or AI/ML systems are in evidence. Strategic projects include Pro.SE, Booster NAP.se (funded under Gemeinsame Gesundheitsziele), aRAREness, and PRONAP, alongside strategy papers and scientific works. Partnerships span EURORDIS, the Austrian Health Forum, NKSE/Orphanet Austria, ERN-Eye, PH Salzburg, Kinderliga, and ÖKUSS.
Pro Rare Austria operates a community-led, event-driven go-to-market motion with a freemium pricing model — all services are provided free of charge to affected individuals, families, and members. Revenue mechanics consist of voluntary donations, membership fees from patient organizations and individuals, and public funding/grants (including project-based allocations such as Gemeinsame Gesundheitsziele for Booster NAP.se). The team is small (1–10 employees), led by Managing Director Ella Rosenberger (Geschäftsführerin) and governed by an elected board chaired by Ulrike Holzer (Obfrau) with deputy Dominique Sturz, board members Michaela Weigl and Claas Röhl, and a Medical Advisory Board; Cornelius Obonya serves as public ambassador. No parent company, ownership stake, funding rounds, or M&A activity are indicated.
Pro Rare Austria firmographics
Firmographics- Name
- Pro Rare Austria
- Legal name
- Pro Rare Austria
- Website
- https://prorare-austria.org
- Company type
- Private
- Founded year
- 2012
- Operating status
- Operating
- Headcount range
- 1–10 employees
- Short description
- Pro Rare Austria is a Vienna-based non-profit umbrella organization coordinating advocacy, networking, and support services for rare disease self-help groups in Austria, representing 98 member organizations and serving approximately 450,000 affected individuals.
- Ownership category
- akta.pro rank
Pro Rare Austria industry classification
Industry- Product category
- Patient Advocacy Services
- NAICS
- Voluntary Health Organizations (813212), Human Rights Organizations (813311), Other Individual and Family Services (624190)
- SIC
- Services-Social Services (8300), Services-Membership Organizations (8600)
- akta.pro primary industry
- Rare Disease & Special Needs Support Organizations (BPAGACAM)
- akta.pro secondary industry
- Disability Rights & Accessibility Advocacy (BPAGAFAF)
Keywords
Where Pro Rare Austria is headquartered
LocationHeadquarters
- HQ city
- Vienna
- HQ country
- Austria
- HQ region
- Europe
Offices2 records
Markets served
Pro Rare Austria business model
Business model- GTM type
- B2C
- Offering type
- Services
- Cost components
- Personnel, Operations, Marketing or Sales, Others, Technology or R&D
Revenue model
- Donations: The organization accepts donations from the public to support its mission of helping people with rare diseases. Donation information is prominently featured on the website with a dedicated 'Jetzt spenden' (Donate now) button.
- Membership fees: Pro Rare Austria operates as an alliance with members including patient organizations and individual affected persons. Membership supports the organization's advocacy and support activities.
- Public funding and grants: The organization receives funding from public sources including Gemeinsame Gesundheitsziele (Joint Health Goals) for specific projects like Booster NAP.se, as well as support from sponsors and funders.
Pricing tiers
| Model | Billing | Price |
|---|---|---|
| Freemium | Others | Free membership and support services |
Go-to-market motion2 records
Distribution channels4 records
Marketing channels6 records
Pro Rare Austria product offering
Product offeringCore offering
Pro Rare Austria is a non-profit patient advocacy alliance (Allianz für seltene Erkrankungen) that provides free support, information, and advocacy services for people affected by rare diseases in Austria. Its offerings include a dedicated telephone Helpline for rare diseases, annual networking meetings (Vernetzungstreffen), the Austrian Congress for Rare Diseases, Rare Disease Day activities, newsletters, and targeted projects such as Pro.SE, Booster NAP.se, aRAREness, and PRONAP. The organization represents approximately 98 member patient organizations and advocates at both national and EU levels for better policies and healthcare structures.
Product overview
Pro Rare Austria is a non-profit patient advocacy organization (Allianz für seltene Erkrankungen / Alliance for Rare Diseases) that provides support services for people with rare diseases in Austria. The organization offers a Helpline for rare diseases, organizes networking events and congresses, publishes newsletters, produces educational videos and press materials, and runs advocacy projects including Pro.SE, Booster NAP.se, aRAREness, and PRONAP. Rather than a commercial product or software platform, Pro Rare Austria delivers services through advocacy work, community building, information dissemination, and political engagement for the rare disease community in Austria.
Differentiator
Problem solved
Functional benefit
Products and services
- Helpline Seltene Erkrankungen (SE) Dedicated telephone helpline for members, affected individuals, and relatives of people with rare diseases. Service hours are Monday–Thursday 10:00–15:00, reachable at +43 664 280 37 67. Provided free of charge as a direct support channel.
- Vernetzungstreffen (Annual Networking Meeting) Annual networking meeting bringing together Pro Rare Austria's 98 member organizations, affected individuals, and stakeholders. The 2023 edition drew over 100 participants and is held in cooperation with ÖGB Catamaran in Vienna.
- Austrian Congress for Rare Diseases Annual congress (13th edition held at Josephinum, Vienna in 2023) organized jointly with Forum für Seltene Krankheiten, bringing together healthcare professionals, researchers, and patient representatives to discuss rare disease policies and healthcare system improvements. The 1st DACH Congress for Rare Diseases was held in 2025.
- Alliance Membership for Patient Organizations Membership program for patient organizations and individual affected persons joining the Pro Rare Austria alliance. As of October 2023, the alliance had 98 members who receive advocacy representation, networking opportunities, and access to member services.
- Newsletter Regular newsletter publications (monthly/quarterly) keeping subscribers informed about Pro Rare Austria's activities, events, and rare disease topics. Free subscription via the website.
- Pro.SE Project One of Pro Rare Austria's advocacy projects supporting people with rare diseases, listed as a dedicated project on the organization's website alongside Booster NAP.se, aRAREness, and PRONAP.
- Booster NAP.se Project Project funded under Gemeinsame Gesundheitsziele (Joint Health Goals) focusing on transition and psychosocial care for rare diseases. Status reported by board members Michaela Weigl and Claas Röhl.
- aRAREness Project Pro Rare Austria project launched in 2021 to raise awareness about rare diseases, accompanying the premiere of the multimedia report 'Einfach nur Jakob'.
- PRONAP Project Pro Rare Austria project listed alongside Pro.SE, Booster NAP.se, and aRAREness, focused on rare disease advocacy work.
- Young Rare (Youth Self-Help) Youth-focused self-help program under Pro Rare Austria providing a community and resources for young people affected by rare diseases, promoted on the homepage as part of the alliance's outreach.
Quantifiable outcome
- 450,000 people affected by rare diseases in Austria represented
- +2 more outcomes
Companies that use Pro Rare Austria
Customer profileNamed customers1 record
Segments3 records
Ideal customer profiles3 records
Pro Rare Austria technology and API
TechnologyTechnology focussed No
API detail
- Has API
- No
- API docs
- API detail
Core technology
AI maturity
App detail
Pro Rare Austria partnerships and signals
Strategic signalPartnerships
Nine partnerships are on record, tiered core and minor.
- Orphanet Austria / NKSE (Nationale Koordinationsstelle für Seltene Erkrankungen)coreSince 2026, NKSE at Gesundheit Österreich GmbH (GÖG) serves as the contact point for Orphanet Austria. Pro Rare Austria collaborates on patient organization visibility and Rare Disease Day activities.
- Austrian Health Forum (AHF)coreCollaboration on NetUp events focused on rare diseases at the Austrian Health Forum. These events bring together healthcare stakeholders to discuss rare disease policies and healthcare system improvements.
- Forum für Seltene KrankheitencoreAnnual Congress for Rare Diseases organized jointly, bringing together healthcare professionals, researchers, and patient representatives.
- EURORDIS – Rare Diseases EuropecorePro Rare Austria is a member of EURORDIS, the European organization representing rare disease patients. This membership enables participation in EU-level policy discussions, access to European Reference Networks (ERNs), and international collaboration on rare disease advocacy.
- Pädagogische Hochschule Salzburg (PH Salzburg)coreJoint project 'Wissen hilft! Umgang mit Seltenen Erkrankungen in der Schule' creating educational materials for schools about rare diseases. A lesson plan was recognized internationally.
- Österreichische Liga für Kinder- und Jugendgesundheit (Kinderliga)corePartnership on projects addressing children's health including transition from pediatric to adult care and mental health of children with rare diseases.
- ÖKUSS – Österreichische Kompetenz- und Servicestelle für SelbsthilfecoreÖKUSS supports self-help and patient organizations with training, continuing education, and resources. Pro Rare Austria participates in ÖKUSS seminars and contributes to transparency and compliance guidelines.
- ÖGB Chancen Nutzen BürominorCollaboration on hosting the Vernetzungstreffen event at the ÖGB Catamaran venue in Vienna.
- ERN-Eye (European Reference Network for Rare Eye Diseases)corePro Rare Austria Obfrau-Stellvertreterin Dominique Sturz serves as patient representative in ERN-Eye, contributing to development of guidelines like the Usher Syndrome 'Do's and Don'ts' video.
Scale indicators4 records
Recent moves6 records
Expansion highlights5 records
Pro Rare Austria competitors and assessment
Company assessmentDirect peers
- National Organization for Rare Disorders (NORD): US-based umbrella patient advocacy organization for rare diseases; operates an analogous alliance model with member patient organizations, advocacy, and support services, though serving a different national market.
- EURORDIS – Rare Diseases Europe: European umbrella organization representing rare disease patient organizations; Pro Rare Austria is a member and directly comparable in mission and member-driven advocacy model, though operating at the pan-European level.
- Canadian Organization for Rare Disorders (CORD): Canadian national coalition for rare disease patient organizations with similar advocacy, policy, and networking functions, providing a comparable model outside Europe.
- ProRaris – Allianz Seltener Krankheiten Schweiz: Swiss national alliance for rare diseases providing advocacy, networking, and patient support comparable to Pro Rare Austria; serves the Swiss market but operates the same alliance-of-patient-orgs model.
- ACHSE – Allianz Chronischer Seltener Erkrankungen: German umbrella alliance for chronic rare diseases with a near-identical mission, structure, and member-driven model; the closest direct peer in the DACH region and a natural benchmark for Pro Rare Austria's activities.
Others
- Orphanet: International reference portal and database for rare diseases and orphan drugs; complements Pro Rare Austria's work by providing clinical and research information rather than direct advocacy, with overlapping partnerships (e.g., Orphanet Austria/NKSE).
- ÖKUSS – Österreichische Kompetenz- und Servicestelle für Selbsthilfe: Austrian federal support and service center for self-help organizations; provides training and infrastructure to organizations like Pro Rare Austria, functioning as an adjacent ecosystem enabler rather than a competitor.
- EURORDIS-Eye / ERN-Eye: European Reference Network for rare eye diseases; Pro Rare Austria's deputy chair serves as patient representative, illustrating how ERNs are operational partners rather than competitors but operate in the same rare disease ecosystem.
Regional players
- Rare Voices Australia: Australian national peak body for rare diseases; comparable in mission and advocacy scope but serves a different geography, functioning as a regional peer in the rare disease advocacy space.
Broad incumbents
- Rare Diseases International (RDI): Global alliance of rare disease patient organizations; broader in geographic scope and serves as the international counterpart to national alliances like Pro Rare Austria.
Market position
Strengths5 records
Weaknesses5 records
Competitive moat3 records
Key risks5 records
Key highlights7 records
Customer concentration
Pro Rare Austria social profiles
Digital presencePro Rare Austria financial estimates
Financial estimateRevenue estimate
Valuation estimate
Pro Rare Austria leadership team
Management profileNumber of profiles
Profiles7 records
Pro Rare Austria funding detail
Funding detailFunding overview
Funding rounds
Investors
Funding detail is available on the Subscription and Enterprise plan.Contact sales →
Pro Rare Austria M&A and investment
M&A and investmentM&A
Investments
M&A and investment is available on the Subscription and Enterprise plan.Contact sales →
Frequently asked questions about Pro Rare Austria
What does Pro Rare Austria do?
Pro Rare Austria is a non-profit patient advocacy alliance (Allianz für seltene Erkrankungen) that provides free support, information, and advocacy services for people affected by rare diseases in Austria. Its offerings include a dedicated telephone Helpline for rare diseases, annual networking meetings (Vernetzungstreffen), the Austrian Congress for Rare Diseases, Rare Disease Day activities, newsletters, and targeted projects such as Pro.SE, Booster NAP.se, aRAREness, and PRONAP. The organization represents approximately 98 member patient organizations and advocates at both national and EU levels for better policies and healthcare structures.
Is Pro Rare Austria a public or private company?
Pro Rare Austria is a private company. It is classified as nonprofit foundation owned and is currently operating.
When was Pro Rare Austria founded?
Pro Rare Austria was founded in 2012. It employs 1 to 10 people.
Where is Pro Rare Austria based?
Pro Rare Austria is headquartered in Vienna, Austria, in the Europe region.
How does Pro Rare Austria make money?
Three revenue lines are on record. Donations are the primary driver. The others are membership fees and public funding and grants.
Who are Pro Rare Austria's main competitors?
Direct peers on record are National Organization for Rare Disorders (NORD), EURORDIS – Rare Diseases Europe, Canadian Organization for Rare Disorders (CORD), ProRaris – Allianz Seltener Krankheiten Schweiz and ACHSE – Allianz Chronischer Seltener Erkrankungen. Others are Orphanet, ÖKUSS – Österreichische Kompetenz- und Servicestelle für Selbsthilfe and EURORDIS-Eye / ERN-Eye. Rare Voices Australia is listed as a regional player. Rare Diseases International (RDI) is listed as a broad incumbent.
Does Pro Rare Austria have an API?
No public API is recorded for Pro Rare Austria.
What industry is Pro Rare Austria in?
Pro Rare Austria's product category is Patient Advocacy Services. Its primary akta.pro industry code is BPAGACAM, Rare Disease & Special Needs Support Organizations, with a secondary code of BPAGAFAF, Disability Rights & Accessibility Advocacy. Its NAICS code is 813212 and its SIC code is 8300.