NORBS - National Organisation for Rare Diseases of Serbia

What NORBS - National Organisation for Rare Diseases of Serbia does

NORBS (Nacionalna organizacija za retke bolesti Srbije / National Organisation for Rare Diseases of Serbia) is a non-governmental, non-profit, volunteer-led patient alliance founded in 2010 in Belgrade, Serbia. It was established as an umbrella federation of patient associations representing individuals with rare diseases and their family members, and it remains the only national-level patient organization of its kind in the country. NORBS operates in a country where an estimated 6% to 8% of the population — approximately 500,000 citizens — is affected by a rare disease, according to the European Commission methodology referenced in Serbian policy.

The organization's core offerings are free human-delivered support services, not technology products. These include a national free helpline (0800 333 103, weekdays 9h–13h), guidance on health protection, social protection, legal aid (sick leave, disability pension, employment rights), and psychological support, complemented by a resource library of publications, videos, brochures, and research on rare diseases, a monthly newsletter, and event-based advocacy (roundtables, conferences, Rare Disease Day campaigns). NORBS is a member of EURORDIS, Rare Disease International, and Euro-DyMA, giving it international reach, and operates multi-year programs such as the SHARE-RD project (January 2025 – July 2028, total value 490,667.91 EUR, 77.56% EU-financed).

The business model is that of a charitable NGO: all services to patients and families are free of charge, with operating funds sourced from grants (EU institutional funders, pharmaceutical companies such as Amgen via the #RAREis Global Advocate Grant and PTC Therapeutics for website development), donations, and project-based funding. The organization has approximately 5 employees, is led by a President (Vladan Žikić) and a Managing Board with Vice Presidents (Iva Omrčen, Aleksandra Milutinović), and has no parent company or external private equity backing. Distribution is purely domestic (Serbia) and is conducted through the helpline, website (norbs.rs), social media, and in-person events.

Name

NORBS - National Organisation for Rare Diseases of Serbia

Legal name

Nacionalna organizacija za retke bolesti Srbije (NORBS)

Website

https://norbs.rs

Company type

Private

Founded year

2010

Operating status

Operating

Headcount range

1–10 employees

Short description

NORBS is the national Serbian patient-led alliance for rare diseases, founded in 2010, providing a free helpline, legal and psychological support, health and social protection guidance, and educational resources to approximately 500,000 Serbian citizens living with rare diseases and their families.

Ownership category

akta.pro rank

Product category

Patient Advocacy Services

NAICS

Social Assistance (624), Individual and Family Services (6241), Health Care and Social Assistance (62)

SIC

Services-Social Services (8300), Services-Misc Health & Allied Services, Nec (8090)

akta.pro industry

PRIMARYBPAGACAM

Rare Disease & Special Needs Support Organizations

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

SECONDARYBPADAIAK

Non-Communicable Diseases (NCDs) & Mental Health Programs

Business & Public Services/International Organizations & Development/Global Health & Population Programs

Keywords

• Rare disease advocacy
• Patient support services
• Health helpline services
• Patient association alliance
• Nonprofit healthcare advocacy

Headquarters

HQ city

Belgrade

HQ country

Serbia

HQ region

Europe

Offices1 record

Markets served

GTM type

B2C

Offering type

Services

Cost components

Personnel, Operations, Marketing or Sales, Others

Revenue model

1. Donations and Grants: NORBS operates as a non-profit NGO funded through monetary donations and project grants from international organizations, pharmaceutical companies, and government programs.

Go-to-market motion1 record

Distribution channels2 records

Marketing channels6 records

Core offering

NORBS is the national alliance of rare disease patient associations in Serbia, providing free support services to persons with rare diseases and their families. Its offerings include a national helpline (0800 333 103), health and social protection information, legal aid, psychological support, and educational resources such as publications, videos, and research materials. The organization also runs advocacy programs and EU-funded projects to strengthen patient organization capacities.

Product overview

NORBS (National Organisation for Rare Diseases of Serbia) is a non-governmental, non-profit, volunteer-driven organization founded in 2010 as an association of patient organizations. It is NOT a technology company offering software products. Instead, NORBS provides a portfolio of support services for people with rare diseases and their families, including: a free help line (0800 333 103), health and social protection guidance, legal aid, psychological support, a monthly newsletter, and educational resources (publications, videos, research). The organization also runs advocacy programs and EU-funded projects such as SHARE-RD (2025-2028) focused on strengthening patient advocacy and healthcare access. Services are provided through the website, help line, and in-person activities rather than through software products or platforms.

Differentiator

Problem solved

Functional benefit

Products and services

• Free Help Line (Linija pomoći) A free national helpline (0800 333 103) providing information and support on health protection, social protection, legal aid, and psychological support to patients with rare diseases and their families, available weekdays 9h-13h.
• Health Protection Information Services (Zdravstvena zaštita) Information and guidance on healthcare rights, access to medical services, and health protection for people with rare diseases in Serbia.
• Social Protection Information Services (Socijalna zaštita) Guidance on social welfare rights, regulations, and services available to people with rare diseases and their families in Serbia.
• Legal Aid (Pravna pomoć) Information on legal rights including sick leave compensation, parental leave, disability pension, and employment laws for persons with rare diseases and their families.
• Psychological Support (Psihološka podrška) Articles and guidance on mental health for patients with rare diseases and their family members dealing with the emotional challenges of diagnosis and care.
• Rare Disease Resources Library (Resursi) A collection of publications, videos, brochures, and research documents on rare diseases including guides on Duchenne muscular dystrophy, multiple myeloma, mental health, and patient rights, available free of charge via the NORBS website.
• NORBS Newsletter Monthly newsletter providing updates on NORBS activities and important news from the rare diseases field, distributed to subscribers free of charge.
• SHARE-RD Project (Strengthening Healthcare Advocacy and Rare Disease Patient Engagement) A four-year EU-funded project aimed at improving healthcare access and quality of life for people with rare diseases through strengthening patient organization capacities and advocacy.
• Parent Support Program (Podrška za roditelje dece sa retkim bolestima) A support program for parents of children with rare diseases, including a comprehensive handbook based on parent experiences, workshops, and support groups.
• NORBS+ Foundation (Fondacija NORBS+) A foundation affiliated with NORBS for extended support services and fundraising for rare disease patients in Serbia.

Quantifiable outcome

• Free helpline operational on weekdays 9h–13h at 0800 333 103

Named customers1 record

Segments1 record

Ideal customer profiles1 record

Technology focussed No

API detail

Has API

No

API docs

API detail

Core technology

AI maturity

App detail

Partnerships

Eight partnerships are on record, tiered core.

• EURORDIS (European Organisation for Rare Diseases)coreStrategic or Co-development Partner · 1 January 2010NORBS is a member of EURORDIS, the European Organisation for Rare Diseases. This membership provides access to the European rare disease network, best practices, training programs such as EURORDIS Open Academy, and international advocacy platforms.
• Rare Disease InternationalcoreStrategic or Co-development PartnerNORBS is a member of Rare Disease International, a global alliance of rare disease patient organizations.
• Euro-DyMA (European Dysmelia and Malformation Alliance)coreStrategic or Co-development PartnerNORBS is a member of Euro-DyMA, the European Dysmelia and Malformation Alliance.
• Udruženje obolelih od limfoma (LIPA)coreStrategic or Co-development PartnerLIPA is a project partner in the SHARE-RD project ('Strengthening Healthcare Advocacy and Rare Disease Patient Engagement'), led by NORBS with EU funding. The project runs from January 2025 to July 2028 with a total value of 490,667.91 EUR.
• Udruženje 'Hrabriša'coreStrategic or Co-development PartnerHrabriša is a project partner in the SHARE-RD project, led by NORBS with EU funding. The project aims to improve access to healthcare and quality of life for persons with rare diseases through capacity building and advocacy.
• Medicinski fakultet Univerziteta u Beogradu (Faculty of Medicine, University of Belgrade)coreStrategic or Co-development PartnerNORBS partners with the Faculty of Medicine, University of Belgrade for medical education events, such as the Rare Disease Day 2026 professional seminar on neurodevelopmental disorders, and the 2025 Continuing Medical Education program.
• Centar za retke bolesti (Centre for Rare Diseases)coreStrategic or Co-development PartnerNORBS partners with the Centre for Rare Diseases for joint education and advocacy initiatives.
• Institut za molekularnu genetiku i genetičko inženjerstvo (Institute of Molecular Genetics and Genetic Engineering)coreStrategic or Co-development PartnerNORBS collaborated with the Institute of Molecular Genetics and Genetic Engineering on a cycle of continuing medical education for healthcare professionals.

Scale indicators6 records

Recent moves7 records

Expansion highlights5 records

Direct peers

• NORD (National Organization for Rare Disorders): The US national patient advocacy organization for rare diseases. Like NORBS, it is a patient-led umbrella federation providing patient support, advocacy, policy engagement, and education. The most established model of a national-level rare disease patient alliance that NORBS parallels in Serbia.
• Canadian Organization for Rare Disorders (CORD): Canada's national alliance for rare disease patient organizations. Provides policy advocacy, patient support resources, and convening of member organizations in a single national market, structurally analogous to NORBS in Serbia.
• Rare Diseases Ireland: National alliance for rare diseases in Ireland, providing information, support, and advocacy. Closely comparable in mission and operational scope to NORBS, and similar in scale as a small national NGO.
• ACHSE (Allianz Chronischer Seltener Erkrankungen): German umbrella organization for people with chronic rare diseases and their relatives. Comparable to NORBS as a national-level patient federation with policy advocacy and member association coordination.
• Genetic Alliance: US-based non-profit engaging individuals, families, and communities in advocacy for genetic and rare conditions. Parallels NORBS's role in patient-led advocacy, support, and engagement around rare and genetic conditions.
• Rare Disease International: Global alliance of rare disease patient organizations; NORBS is a member. Operates patient advocacy and policy work at the global level, with comparable mission scope to NORBS but at international rather than national scale.
• Rare Voices Australia: Australia's national non-profit advocacy body for Australians living with a rare disease. Convenes patient groups, engages government on rare disease policy, and provides educational resources — a direct functional parallel to NORBS.

Emerging players

• SWAN UK (Syndromes Without A Name): UK-based patient support organization focused on undiagnosed and rare genetic conditions, providing family support and information. Comparable in service offering to NORBS's helpline and psychological support, though narrower in disease scope.

Broad incumbents

• Orphanet: International reference portal for rare diseases and orphan drugs providing disease information, expert directories, and epidemiological data. Overlaps with NORBS's informational resource mission but at significantly broader scope and global scale.
• EURORDIS (European Organisation for Rare Diseases): The pan-European umbrella rare disease federation of which NORBS is a member. EURORDIS operates at the European level across policy, research, and patient advocacy, while NORBS performs a comparable role at the national level in Serbia.

Market position

Strengths5 records

Weaknesses4 records

Competitive moat4 records

Key risks5 records

Key highlights7 records

Customer concentration

• LinkedInlinkedin.com/company/norbs

Revenue estimate

Valuation estimate

Number of profiles

Profiles5 records

Subsidiaries1 record

Funding overview

Funding rounds

Investors

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M&A

Investments

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Frequently asked questions about NORBS - National Organisation for Rare Diseases of Serbia