UNIAMO Federazione Italiana Malattie Rare

What UNIAMO Federazione Italiana Malattie Rare does

UNIAMO Federazione Italiana Malattie Rare is a private non-profit patient federation founded in 1999 and headquartered in Rome, operating under the legal form APS/ETS (Associazione di Promozione Sociale / Ente del Terzo Settore) and registered in Italy's National Third Sector Register (RUNTS) since 7 February 2023. It functions as the national coordinating body for over 200 affiliated patient associations, collectively representing nearly 2 million Italians living with a rare or ultra-rare disease — approximately 5% of Italy's population. As the Italian National Alliance of EURORDIS, UNIAMO coordinates Rare Disease Day activities in Italy and contributes to European rare disease policy.

Its core service portfolio is advocacy- and support-oriented rather than technology-based. Direct offerings include SAIO (Servizio di Ascolto, Informazione e Orientamento) for psychological support, legal guidance, and National Health System orientation; the UNIAMO Academy e-learning platform for patients, caregivers, and association representatives; the annual MonitoRare Report aggregating data from the Ministry of Health, AIFA, ISS, INPS, regional centers, Orphanet, and Telethon; the annual Rare Diseases Award; the Conoscere per Assistere 2.0 ECM training course for general practitioners and pediatricians; the ChiacchieRARE vodcast; the malatirari.it community platform; and the Vite Rare storytelling initiative. The federation does not develop proprietary technology products; its digital footprint (website, learning platform, community platform, newsletter) is built on standard publishing and learning infrastructure.

Revenue is generated through a diversified non-profit model: individual donations via Stripe and bank transfer, the Italian 5×1000 tax designation (fiscal code 92067090495), €100 annual membership fees from affiliated associations, project-based grants from public institutions (Ministry of Labor, Presidency of the Council of Ministers, EU programs), and non-conditional contributions from pharmaceutical companies (Chiesi Global Rare Diseases, Merck Italia, Farmindustria). Operations run on a lean footprint of approximately 11 staff across 8 Italian locations (Rome HQ plus Lavello, Scandicci, Palermo, Milano, Genova, Osimo, Torino), with governance led by President Annalisa Scopinaro and a Board including Vice President Marco Sessa, Treasurer Fabrizio Farnetani, and Secretary Vanessa Cerrone.

Name

UNIAMO Federazione Italiana Malattie Rare

Legal name

UNIAMO - Federazione Italiana Malattie Rare ETS APS

Website

https://uniamo.org

Company type

Private

Founded year

1999

Operating status

Operating

Headcount range

11–50 employees

Short description

UNIAMO is the Italian national federation of 200+ patient associations representing nearly 2 million people with rare diseases. Founded in 1999, it delivers patient support (SAIO), training (UNIAMO Academy), policy research (MonitoRare Report), advocacy campaigns, and represents Italy within EURORDIS.

Ownership category

akta.pro rank

Product category

Rare Disease Patient Advocacy and Federation Services

NAICS

Other Similar Organizations (except Business, Professional, Labor, and Political Organizations) (813990), Individual and Family Services (6241)

SIC

Services-Social Services (8300), Services-Health Services (8000)

akta.pro primary industry

Rare Disease & Special Needs Support Organizations (BPAGACAM)

akta.pro secondary industry

Genetic & Genomic Rare Disease Therapeutics (HLAIAIAA)

Keywords

• Rare disease advocacy
• Patient federation services
• Patient support programs
• Nonprofit healthcare federation
• Rare disease policy

Headquarters

HQ city

Roma

HQ country

Italy

HQ region

Europe

Offices8 records

Markets served

GTM type

B2B

Offering type

Services

Cost components

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

Revenue model

1. Individual Donations: UNIAMO accepts one-time and recurring donations from individuals. Single donations can be made via bank transfer (IBAN: IT53M0306909606100000010339) or Stripe. Recurring donation options are available through Stripe. Donors can receive tax deduction documentation handled by UNIAMO.
2. 5×1000 Tax Designation: Italian taxpayers can designate 5×1000 of their income tax to UNIAMO by entering fiscal code 92067090495 on their tax return (730 or CU). This represents a significant revenue stream from public tax contributions.
3. Membership Fees: Affiliated associations pay an annual membership fee of €100 (quota di affiliazione annuale) to the federation, as stated in the federation bylaws.
4. Project Grants and Non-Conditional Contributions: UNIAMO receives project-based funding from public institutions (Ministry of Labor and Social Policies, Presidency of the Council of Ministers, EU programs) and non-conditional contributions from private companies (pharmaceutical companies Chiesi Global Rare Diseases, Merck Italia). Projects include PRO.RARE, S.M.A.R.T. 2.0, C.A.T., S.O.F.I.A., JARDIN, Recon4IMD.

Pricing tiers

Go-to-market motion2 records

Distribution channels5 records

Marketing channels10 records

Core offering

UNIAMO Federazione Italiana Malattie Rare is a national patient federation that represents, supports, and advocates for the Italian rare disease community. It federates over 200 patient associations, delivers direct support services to patients, families, and caregivers (SAIO listening/information/orientation), provides e-learning and CME training (Uniamo Academy, Conoscere per Assistere 2.0), produces the annual MonitoRare monitoring report, coordinates the Italian Rare Disease Day campaign, and represents the community in institutional and European policy forums.

Product overview

UNIAMO Federazione Italiana Malattie Rare operates as a federation of over 200 patient associations representing nearly 2 million people with rare diseases in Italy. Its service portfolio centers on patient support (SAIO), patient education (Uniamo Academy), policy research and data aggregation (MonitoRare), project recognition (Rare Diseases Award), and public awareness campaigns (Giornata delle Malattie Rare). Complementary offerings include ChiacchieRare (video/podcast), the Malatirari.it community platform, Conoscere per Assistere 2.0 (CME training for physicians), the Vite Rare storytelling initiative, and the RaraMente newsletter. The organization functions as a non-profit federation rather than a technology product company, and its offerings are primarily advocacy, support, and educational services rather than software products.

Differentiator

Problem solved

Functional benefit

Products and services

• SAIO – Servizio di Ascolto, Informazione e Orientamento A direct listening, information, and orientation service for people with rare diseases, their families, and caregivers, offering psychological support, legal guidance, and orientation within the Italian National Health System and Rare Disease Network. Contact channels include [email protected], [email protected], and [email protected].
• Uniamo Academy A patient-led e-learning training platform hosted at academy.uniamo.org offering courses on rare diseases, ethics committees, Health Technology Assessment, and research participation for patients, caregivers, and patient association representatives.
• Rapporto MonitoRare An annual report aggregating data from the Ministry of Health, AIFA, ISS, INPS, regional rare disease coordinators, Orphanet, Telethon, and other entities to provide a comprehensive overview of the rare disease landscape in Italy, including a Barometro survey of patients.
• Rare Diseases Award (Premio Malattie Rare) An annual award recognizing the most deserving projects serving rare disease patients in Italy, selected by a jury of patient association representatives. Categories include Awareness (Sensibilizzazione), Services (Servizi), Autonomy and Quality of Life (Autonomia/qualità della vita), and Digital Innovation and AI.
• ChiacchieRare (vodcast series) A video/podcast series featuring dialogue between clinical experts and rare disease patient association representatives, covering specific rare diseases and related topics.
• Malatirari.it community platform A virtual community platform for patient associations, healthcare professionals, people with rare diseases, and caregivers to share information, connect over shared experiences, and access expertise.
• Conoscere per Assistere 2.0 A free online ECM-accredited training course for General Practitioners and Pediatricians aimed at improving early recognition, diagnostic pathways, and territorial care for people with rare diseases. Delivered in collaboration with SIMGePeD, SIP, SIMG, FIMMG-METIS, and FIMP; provides 13.5 CME credits.
• Vite Rare A storytelling platform collecting personal stories of people with rare diseases, caregivers, and families to encourage and support those navigating similar challenges.
• Newsletter RaraMente A biweekly newsletter dedicated to the rare disease universe, published on the Italian Ministry of Health's Rare Diseases Portal in collaboration with Istituto Superiore di Sanità, covering scientific news, patient associations, research updates, and events.
• Giornata delle Malattie Rare (Rare Disease Day Italy) An annual awareness campaign coordinated at national level by UNIAMO on February 28/29, engaging patient associations, institutions, families, caregivers, and civil society around a specific rare disease theme each year. The 2026 edition focuses on access to therapies and non-pharmacological treatments under the theme #UNIAMOleforze2026.

Quantifiable outcome

• MonitoRare Report aggregates data from Ministry of Health, AIFA, ISS, INPS, all regional rare disease coordinators, Orphanet, Telethon, and other entities, providing the sole comprehensive annual monitoring of Italy's rare disease ecosystem.
• +3 more outcomes

Named customers9 records

Ideal customer profiles4 records

Technology focussed No

API detail

Has API

No

API docs

API detail

Core technology

AI maturity

App detail

Partnerships

26 partnerships are on record, tiered core and minor.

• Istituto Superiore di Sanità (ISS)coreStrategic or Co-development Partner · 1 January 2020Formal scientific collaboration agreement signed on 17 October 2020. UNIAMO collaborates actively with ISS and the Centro Nazionale Malattie Rare for online scientific meetings and the RaraMente newsletter. The collaboration produces biweekly RaraMente newsletter published on the Portal of Rare Diseases (malattierare.gov.it).
• EURORDIS – Rare Diseases EuropecoreStrategic or Co-development Partner · 1 January 2008UNIAMO is the Italian National Alliance of EURORDIS (European Organisation for Rare Diseases). As such, it coordinates the Rare Disease Day in Italy, participates in EURORDIS governance (UNIAMO's Simona Bellagambi sits on the EURORDIS Board), and contributes to European rare disease policy and advocacy.
• Università LUMSA di RomaminorStrategic or Co-development PartnerFive-year collaboration agreement signed in early 2021 for awareness initiatives on rare diseases. First project: 'Con le tue parole' training course for inclusive schools, involving also Università Cattolica del Sacro Cuore and Università di Messina.
• KonceptminorStrategic or Co-development PartnerPartnership for the annual Rare Diseases Award. Koncept co-organizes the award with UNIAMO, which is judged by patient association representatives and celebrates projects serving the rare disease community.
• FAVO – Federazione Italiana delle Associazioni di Volontariato in OncologiaminorStrategic or Co-development PartnerCollaboration born from shared cross-cutting needs in patient advocacy. Joint actions include communications, appeals, and amendments for patient rights protection. Also collaborating on UNIAMO Academy training course 'La Voce del Paziente nel Comitato Etico'.
• AIL – Associazione Italiana LeucemieminorStrategic or Co-development PartnerCollaboration with AIL alongside FAVO and UNIAMO on cross-cutting patient advocacy issues for shared rights protection.
• Forum III SettoreminorStrategic or Co-development PartnerCollaboration began during the IntegRare project. Forum III Settore specialists contributed webinars explaining changes mandated by Third Sector Reform.
• ANFASSminorStrategic or Co-development PartnerCollaboration consolidated through the IntegRare project, driven by shared cross-cutting needs between ANFASS and rare disease patients.
• Consiglio Nazionale del NotariatominorStrategic or Co-development PartnerCollaboration developed during the Social Rare project and consolidated during NS2 (Nuove sfide per nuovi servizi) project.
• S.I.P.Ped. (Società Italiana di Psicologia Pediatrica)minorStrategic or Co-development PartnerCollaboration for customized psychological support programs built for individual member associations.
• SIMGePeD (Società Italiana Malattie Genetiche Pediatriche e Disabilità Congenite)minorStrategic or Co-development PartnerCollaborating society in the Conoscere per Assistere 2.0 project, providing training to GPs and pediatricians on rare diseases. Bound by a formal protocol of understanding.
• SIP (Società Italiana di Pediatria)minorStrategic or Co-development PartnerSIP is an ECM provider (nr 1172) for the Conoscere per Assistere 2.0 course and collaborating partner in the training of pediatricians on rare disease recognition.
• SIMG (Società Italiana di Medicina Generale e delle Cure Primarie)minorStrategic or Co-development PartnerCollaborating society in the Conoscere per Assistere 2.0 project for training of general practitioners on rare diseases.
• FIMMG (Federazione Italiana Medici Medicina Generale) – METISminorStrategic or Co-development PartnerMETIS (scientific society of general practitioners) collaborating on Conoscere per Assistere 2.0 project.
• FIMP (Federazione Italiana Medici Pediatri)minorStrategic or Co-development PartnerFIMP collaborating on Conoscere per Assistere 2.0 training course for pediatricians.
• Presidency of the Council of Ministers (PCM)coreStrategic or Co-development PartnerUNIAMO collaborates with the PCM on disability policy, including events on disability evaluation reform held at the Presidency of the Council. Projects funded include C.A.T. (Costruire Autonomia e Titolarità) and S.O.F.I.A.
• Ministero della SalutecoreStrategic or Co-development PartnerUNIAMO maintains ongoing dialogue with the Ministry of Health on rare disease policy, screening, and access to therapies. The Ministry contributes data to the annual MonitoRare report.
• AIFA – Agenzia Italiana del FarmacocoreStrategic or Co-development PartnerUNIAMO engages with AIFA on access to orphan drugs and therapies for rare disease patients. AIFA contributes data to the annual MonitoRare report.
• Chiesi Global Rare DiseasesminorGTM or Marketing PartnerPharmaceutical company providing non-conditional contribution to the XII Convention MonitoRare 2026 event.
• Merck ItaliaminorGTM or Marketing PartnerPharmaceutical company providing non-conditional contribution to the XII Convention MonitoRare 2026 event.
• European ERN Networks (BOND, METABERN, RECONNET)coreStrategic or Co-development PartnerUNIAMO works with European Reference Network coordinators including Luca Sangiorgi (ERN BOND), Maurizio Scarpa (METABERN), and Marta Mosca (ERN RECONNET). These networks connect Italian rare disease centers with European expertise.
• FARMINDUSTRIAminorGTM or Marketing PartnerItalian pharmaceutical industry association providing non-conditional contribution to the Conoscere per Assistere 2.0 training project.
• SiMMeSn (Società Italiana per lo Studio delle Malattie Metaboliche Ereditarie e lo Screening Neonatale)minorStrategic or Co-development PartnerContributing to MonitoRare report and engaged in newborn screening advocacy.
• INPS – Istituto Nazionale Previdenza SocialeminorStrategic or Co-development PartnerINPS contributes data to the MonitoRare report. UNIAMO engages with INPS on disability recognition and benefits for rare disease patients.
• BBMRI-ERIC (Biobanking and BioMolecular resources Research Infrastructure)minorStrategic or Co-development PartnerUNIAMO participates in the BBMRI-ERIC Stakeholder Forum – Patient Pillar, contributing the patient perspective to European biobanking infrastructure.
• Orphanet ItaliacoreStrategic or Co-development PartnerOrphanet contributes data to the annual MonitoRare report. Orphanet is the European portal for rare disease information.

Scale indicators7 records

Recent moves5 records

Expansion highlights5 records

Direct peers

• NORD – National Organization for Rare Disorders: US-based national federation representing rare disease patient organizations, with 300+ member organizations. Highly comparable functional peer to UNIAMO, providing advocacy, patient services, awareness events, and policy research at national level for the rare disease community.
• Osservatorio Malattie Rare (OMAR): Italian rare disease news and information outlet affiliated with the Testa/Marino scientific communications ecosystem. Comparable as a complementary rare disease advocacy and information provider in Italy that produces policy commentary, news, and educational content for the same Italian rare disease community UNIAMO represents.
• Genetic Alliance: US-based nonprofit federation of genetic and rare disease advocacy organizations. Functionally comparable to UNIAMO as a national-level coalition advocating for genetic/genomic rare disease patients, providing policy advocacy, education, and member support services.
• AIL – Associazione Italiana contro Leucemie, Linfomi e Mieloma: Major Italian patient association federation operating in hematologic cancers. Comparable partner collaborating with UNIAMO and FAVO on patient advocacy, with similar role of representing patient communities before AIFA and the Ministry of Health on access and rights.
• ANFASS – Associazione Nazionale Famiglie di Persone con Disabilità Intellettiva e/o Relazionale: Italian federation representing people with intellectual and relational disabilities and their families. Comparable peer that collaborates with UNIAMO through the IntegRare project on cross-cutting disability and rare disease advocacy, with similar national federation structure and rights-based advocacy model.
• FAVO – Federazione Italiana delle Associazioni di Volontariato in Oncologia: Italian federation of cancer patient advocacy associations. Comparable as a second-tier Italian federation of patient associations collaborating with UNIAMO on cross-cutting patient rights and shared training programs (e.g., La Voce del Paziente nel Comitato Etico), with similar advocacy, training, and policy engagement model.

Others

• Orphanet: European reference portal for rare diseases providing nomenclature, classification, and epidemiological data. Comparable adjacent entity that contributes data to UNIAMO's MonitoRare report and shares overlapping purpose of informing rare disease stakeholders, though operating as an infrastructure/data provider rather than advocacy body.

Broad incumbents

• EURORDIS – Rare Diseases Europe: European umbrella federation of national rare disease alliances including UNIAMO (which is the Italian National Alliance). Directly comparable as a rare disease patient advocacy coalition with similar policy advocacy, awareness campaigns (Rare Disease Day), and operating model focused on patient rights and orphan drug access.

Emerging players

• Fondazione Telethon: Italian research foundation funding rare genetic disease research, contributing data to UNIAMO's MonitoRare report. Comparable as an Italian non-profit in the rare disease space with focused mission (research vs. advocacy) that also runs large-scale donor campaigns like the Telethon TV marathon.

Regional players

• Federación Española de Enfermedades Raras (FEDER): Spanish national federation of rare disease patient associations, also an EURORDIS National Alliance. Comparable as a sister federation to UNIAMO in a different geography, with functionally identical operating model (federation of associations, awareness campaigns, patient services, advocacy before national health authorities).

Market position

Strengths5 records

Weaknesses5 records

Competitive moat4 records

Key risks6 records

Key highlights7 records

Customer concentration

• Xx.com/uniamofimronlus
• YouTubeyoutube.com/channel/UCoxxNtLnU4aQycXzafaBGYg
• Facebookfacebook.com/UniamoMalattieRare
• LinkedInlinkedin.com/company/uniamo-malattie-rare
• Instagraminstagram.com/uniamomalattierare

Revenue estimate

Valuation estimate

Number of profiles

Profiles16 records

Funding overview

Funding rounds

Investors

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M&A

Investments

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Frequently asked questions about UNIAMO Federazione Italiana Malattie Rare