Riksförbundet Sällsynta diagnoser

What Riksförbundet Sällsynta diagnoser does

Riksförbundet Sällsynta diagnoser is a Swedish non-profit patient advocacy organization (intresseorganisation) founded in 1996 and headquartered in Sundbyberg, Sweden. It serves as the sole national umbrella body for people living with rare health conditions in Sweden, uniting approximately 60 diagnosis-specific member associations and more than 17,000 individual members, with an addressable population of roughly 500,000 Swedes (about 5% of the population) affected by one of more than 8,000 known rare diagnoses. Its core remit is to advocate for improved healthcare, support, and treatment; coordinate patient representation in policy decisions; and connect patients with specialized care through Sweden's six Centers for Rare Diseases (CSD) and European Reference Networks.

The organization delivers a portfolio of member services including a free digital patient representative training program (Patientföreträdarutbildning) hosted on the Funktionsrätt Learnify platform, healthcare navigation resources (Vårdtips, Hitta specialist, Fast vårdkontakt, SIP, Vårdplan, Möten i vården templates), a member storytelling archive (Sällsynta berättelser), and the international Rare Disease Day (Sällsynta dagen) awareness campaign. It also operates the three-year Arvsfonden-funded school health project 'Den sällsynt viktiga elevh\u00e4lsan' (2025-2027/2028) and participates in the JARDIN EU project. Technology infrastructure is limited to standard web platforms (Wix-based website), Föreningssupport member management, and Learnify e-learning, with no proprietary AI or technology products.

Revenue is generated through three streams: recurring association support fees (6,000 SEK per member association), multi-year government and project grants (notably the 2026 national strategy allocation of 32.5 million SEK shared across recipients and the Arvsfonden school health project grant), and donations collected via a 90-konto and Swish. The organization operates with a small staff of 1-10 employees and an 11-member elected board led by chairperson Birgitta Termander and CEO Malin Grände, under the patronage of H.K.H. Crown Princess Victoria since 2009. Strategic partnerships with EURORDIS, EUPATI, RDI, SBONN, the CSD network, and Funktionsrätt Sverige anchor its position in the Swedish and European rare disease ecosystem.

Name

Riksförbundet Sällsynta diagnoser

Legal name

Riksförbundet Sällsynta diagnoser

Website

https://sallsyntadiagnoser.se

Company type

Private

Founded year

1998

Operating status

Operating

Headcount range

1–10 employees

Short description

Riksförbundet Sällsynta diagnoser is a Swedish non-profit patient advocacy organization that unites approximately 60 diagnosis-specific member associations and 17,000+ individual members to represent people with rare health conditions, delivering advocacy, healthcare navigation resources, and the Arvsfonden-funded school health project in Sweden.

Ownership category

akta.pro rank

NAICS

Other Individual and Family Services (624190)

SIC

Services-Social Services (8300)

akta.pro primary industry

Rare Disease & Special Needs Support Organizations (BPAGACAM)

Keywords

• Patient advocacy services
• Rare disease support
• Healthcare navigation
• Member association network
• Non-profit patient organization

Headquarters

HQ city

Sundbyberg

HQ country

Sweden

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: Revenue is generated through membership fees from approximately 60 member associations and 17,000+ individual members. Member associations pay association support fees, and individual members contribute to fund the organization's advocacy work.
2. Government grants and project funding: The organization receives government funding and project grants, including funding from Arvsfonden (Allmänna Arvsfonden) for the three-year 'Den sällsynt viktiga elevhälsan' project (2025-2027) and allocations from the national strategy for rare health conditions (32.5 million SEK in 2026).
3. Donations and gifts: The organization accepts donations and memorial gifts through its 90-account (90-konto) and Swish payment system (123 900 15 61).

Pricing tiers

Go-to-market motion1 record

Distribution channels4 records

Marketing channels8 records

Core offering

Riksförbundet Sällsynta diagnoser is a non-profit patient advocacy organization that represents approximately 60 diagnosis-specific member associations and more than 17,000 individual members living with rare health conditions in Sweden. Its core offering combines national-level policy advocacy (culminating in the 2026–2030 national strategy for rare diseases), member services (training programs, regional networks, member associations), healthcare navigation resources (care plans, fixed healthcare contact tools, coordinated individual plans, specialist finders), and awareness campaigns such as the internationally observed Rare Disease Day (Sällsynta dagen).

Product overview

Riksförbundet Sällsynta diagnoser is a non-profit interest organization (patient advocacy organization) for people living with rare health conditions in Sweden, not a technology company with products. The organization provides member support services including a digital patient representative training program, advocacy resources, healthcare navigation tools (care plans, coordinated individual plans, finding specialists), and awareness campaigns. Key offerings include the Patientföreträdarutbildning (digital training on Learnify), Vårdtips (healthcare tips and templates), and Den sällsynt viktiga elevhälsan (a three-year Arvsfonden-funded project on student health). The organization represents approximately 17,000 members across about 60 member associations covering various rare diagnoses affecting approximately 500,000 people in Sweden.

Differentiator

Problem solved

Functional benefit

Brands

• Sällsynta dagen: Rare Disease Day - an international awareness day for rare diseases that originated from a Swedish initiative in 2008
• Patientföreträdarutbildning
• Den sällsynt viktiga elevhälsan

Products and services

• Patientföreträdarutbildning (Patient Representative Training)

Quantifiable outcome

• Sweden adopted its first national strategy for rare health conditions (2026-2030) following the organization's advocacy efforts
• +2 more outcomes

Named customers2 records

Segments4 records

Ideal customer profiles3 records

API detail

Has API

No

API docs

API detail

Core technology

AI maturity

App detail

Partnerships

Nine partnerships are on record, tiered core and major.

• EURORDIS (European Organisation for Rare Diseases)coreStrategic or Co-development PartnerEURORDIS is a non-governmental patient-driven alliance of patient organizations representing rare disease patients at the European level. Riksförbundet Sällsynta diagnoser is a proud member of EURORDIS, participating in European advocacy initiatives and the European Conference on Rare Diseases (ECRD). This membership provides access to European reference networks (ERN) and international collaboration on rare disease policy.
• Funktionsrätt Sverige (Disability Sweden)coreStrategic or Co-development PartnerFunktionsrätt Sverige is the Swedish disability rights umbrella organization. Riksförbundet shares office entrance with Funktionsrätt Sverige and participates in joint advocacy efforts. The partnership includes shared insurance coverage through Folksam and access to the Funktionsrätt training portal (Learnify) for patient advocate education.
• EUPATI (European Patients' Academy on Therapeutic Innovation)coreStrategic or Co-development PartnerEUPATI is a European initiative that provides education and training to increase the capacity of patients to understand and meaningfully participate in medicines development. Riksförbundet is a member, enabling access to patient education resources and European pharmaceutical development advocacy.
• RDI (Rare Diseases International)coreStrategic or Co-development PartnerRDI is a global umbrella organization for rare disease patient organizations. Membership enables Riksförbundet to participate in global rare disease advocacy efforts and connect with international patient communities.
• SBONN (Nordic Rare Disease Nurses Network)coreStrategic or Co-development PartnerSBONN is a Nordic network of nurses specializing in rare diseases. Riksförbundet collaborates with SBONN on research and advocacy, including participation at the ECRD conference. The partnership supports knowledge exchange between patient organizations and healthcare professionals.
• Centers for Rare Diseases (CSD) in SwedencoreStrategic or Co-development PartnerSix Centers for Rare Diseases (CSD) exist at university hospitals in Gothenburg, Lund, Linköping, Stockholm, Umeå, and Uppsala-Örebro. These centers collaborate with expert teams covering approximately 90 rare diagnoses and work with European Reference Networks. Riksförbundet connects patients with these centers and participates in CSD in Samverkan coordination.
• JARDIN (EU project on rare disease care)majorStrategic or Co-development PartnerJARDIN is a European Union project where member countries collaborate to improve care for rare disease patients. The project brings together authorities, healthcare, research, and patient organizations. Focus areas include strengthening care networks, improving care processes, using health data and digital solutions better, supporting undiagnosed persons, and increasing patient participation. Sweden participates with Riksförbundet contributing patient perspective.
• FöreningssupportcoreImplementation/ SI/ Consulting PartnerFöreningssupport provides member registry management, newsletter distribution, and communications support for contact persons in member associations and to the federation's members. This partnership enables efficient member management for approximately 60 associations and thousands of individual members.
• Socialstyrelsen (National Board of Health and Welfare)coreStrategic or Co-development PartnerFollowing the organization's advocacy, Socialstyrelsen received a government mandate to coordinate, support, and follow up on the implementation of the national strategy for rare health conditions 2026-2030. The agency will develop knowledge support, including for care transitions and diagnostics, and analyze whether more conditions should be included in national newborn screening.

Scale indicators5 records

Recent moves7 records

Expansion highlights6 records

Direct peers

• EURORDIS (European Organisation for Rare Diseases): European-level alliance of rare-disease patient organizations. Riksförbundet is a member and partners with EURORDIS on European advocacy and the ECRD conference; they share the same constituency (rare-disease patient associations) and advocacy model across a wider geography.
• NORD (National Organization for Rare Disorders): U.S. national umbrella for rare-disease patient organizations. Highly comparable to Riksförbundet in role: a single national coalition of diagnosis-specific groups advocating for policy, research funding, and patient access — just at U.S. scale and policy regime.
• Rare Diseases International (RDI): Global umbrella of rare-disease patient organizations, of which Riksförbundet is a member. Operates the same federation-of-federations advocacy model at a global level, including UN-level engagement and Rare Disease Day coordination.
• Ågrenska: Swedish national competence center for rare diagnoses, also receiving funds from the 2026 national-strategy allocation. Functions as a service-delivery peer to Riksförbundet in the same Swedish rare-disease ecosystem, often co-funding family programs and competence development.
• SWAN UK (Syndromes Without A Name): UK-based support network for families affected by undiagnosed and rare genetic conditions. Highly comparable mission and patient-support offering to Riksförbundet's work on undiagnosed rare-disease pathways, including the JARDIN project focus on undiagnosed patients.

Regional players

• Canadian Organization for Rare Disorders (CORD): Canada's national umbrella for the rare-disease community. Closest international analogue to Riksförbundet in terms of advocacy scope, coalition model, and policy focus, but operating in a different national jurisdiction and health system.

Broad incumbents

• Orphanet: European-hosted reference portal and knowledge base for rare diseases and orphan drugs. Overlaps with Riksförbundet's specialist-finding and patient-navigation mission but is a broader data and classification resource rather than a patient-association federation.
• Genetic Alliance: U.S. umbrella advocacy organization for genetic and rare conditions. Operates a comparable coalition-of-disease-groups model, but with a broader genetics remit than Riksförbundet's narrow rare-disease focus.

Others

• Funktionsrättsl Sverige (Disability Sweden): Sweden's umbrella organization for disability rights; Riksförbundet shares an office entrance and jointly participates in advocacy, insurance coverage, and the Learnify patient-advocate training portal. Closest Swedish enabling partner but covers disability broadly, not rare disease specifically.
• Allmänna Arvsfonden (Swedish Inheritance Fund): Swedish government agency that funds civil-society projects for children, youth, and persons with disabilities — and a direct three-year funder of Riksförbundet's school health project. Functions as a strategic financial partner rather than a peer organization, but shapes the organization's project pipeline and capacity.

Market position

Strengths5 records

Weaknesses5 records

Competitive moat5 records

Key risks5 records

Key highlights7 records

Customer concentration

• YouTubeyoutube.com/@sallsyntadiagnoser8331
• Facebookfacebook.com/sallsyntadiagnoser
• LinkedInlinkedin.com/company/riksf-rbundet-f-r-s-llsynta-diagnoser
• Instagraminstagram.com/sallsyntadiagnoser?utm_source=ig_web_button_share_sheet&igsh=ZDNlZDc0MzIxNw==

Revenue estimate

Valuation estimate

Number of profiles

Profiles9 records

Funding overview

Funding rounds

Investors

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M&A

Investments

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Frequently asked questions about Riksförbundet Sällsynta diagnoser