Lega Italiana Fibrosi Cistica

What Lega Italiana Fibrosi Cistica does

Lega Italiana Fibrosi Cistica (LIFC) is an Italian nonprofit patient-advocacy organization (ODV) founded by parents of children with cystic fibrosis, headquartered at Via Lorenzo il Magnifico 50 in Rome. The organization is structured through 21 regional associations across Italy and serves approximately 6,182 registered CF patients (per the 2023-2024 RIFC report), with an estimated 15,000-18,000 people directly affected by the disease. LIFC delivers an integrated portfolio of services including free social work, legal, and psychological counseling (LIFC CARES), patient and family accommodation near transplant centers (CASE LIFC), telemedicine monitoring for adult patients, and a dedicated employment portal (trovoilmiolavoro.it) developed with Randstad. It also manages the Registro Italiano Fibrosi Cistica (RIFC), the national CF patient registry covering ~98% of the Italian CF population, and operates the annual Forum Italiano sulla Fibrosi Cistica (14th edition scheduled for October 2026 in Alghero).

LIFC operates a diversified, donation-based revenue model with no commercial product or fee-for-service offering. Revenue streams include individual donations (online via PayPal/credit card, bank transfer, postal, SDD), the 5x1000 tax designation (fiscal code 80233410580), corporate partnerships and cause marketing (Vertex Pharmaceuticals, Novartis, Randstad, Mylan/Viatris, Zambon, Acqua Fiuggi), legacy bequests, the Emozioni Solidali e-commerce shop, Facebook fundraising tools, Rete del Dono crowdfunding, and event-driven fundraising led by the flagship 125 Miglia per un Respiro athletic campaign (now in its 6th edition, 2026). The organization's governance is led by President Antonio Guarini and Secretary Matteo Silba, supported by a small central team (1-10 employees) including Social Worker Vanessa Cori (LIFC CARES) and Psychologist Samantha Pastore.

The organization transitioned from Onlus to ODV status in 2022, is GDPR-compliant, and maintains formal institutional relationships including the Intergruppo Parlamentare sulla Fibrosi Cistica, a 2022 Protocol of Understanding with CONI, and ongoing engagement with AIFA, the Ministry for Disabilities, the European CF Society, and the Italian CF Reference Center network. Its scientific, advocacy, and awareness work is reinforced by partnerships with pharmaceutical companies developing CF modulator therapies (notably Vertex, which has invested over $6 billion in CF R&D) and with consumer and sports brands that extend its fundraising reach.

Name

Lega Italiana Fibrosi Cistica

Legal name

Lega Italiana Fibrosi Cistica ODV

Website

https://fibrosicistica.it

Company type

Private

Operating status

Operating

Headcount range

1–10 employees

Short description

Lega Italiana Fibrosi Cistica (LIFC) is an Italian nonprofit patient-advocacy organization (ODV) that supports approximately 6,182 registered cystic fibrosis patients and their families through free social, legal, and psychological services, a national patient registry (RIFC), and institutional advocacy across 21 regional associations in Italy.

Ownership category

akta.pro rank

Product category

Patient Advocacy Services

NAICS

Individual and Family Services (6241), Social Assistance (624), Other Similar Organizations (except Business, Professional, Labor, and Political Organizations) (813990), Services for the Elderly and Persons with Disabilities (62412)

SIC

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

akta.pro industry

PRIMARYHLAKANAK

Cystic Fibrosis & Bronchiectasis Care

Healthcare & Life Sciences/Specialist Medical Practice/Pulmonology & Sleep Medicine

Keywords

• Patient advocacy services
• Cystic fibrosis support
• Nonprofit fundraising
• Disease awareness campaigns
• Social welfare services

Headquarters

HQ city

Rome

HQ country

Italy

HQ region

Europe

Offices2 records

Markets served

GTM type

B2C

Offering type

Services

Cost components

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

Revenue model

1. Individual donations and direct giving: LIFC raises funds through online donations (credit card/PayPal), bank transfers, postal orders, and regular SDD mandates. Donors can make one-time or recurring contributions, with tax deductibility benefits (30% IRPEF deduction up to €30,000 or 10% of total income; deductions for businesses up to €30,000/year or 2% of business income).
2. 5x1000 (tax designation): Italian taxpayers can designate 0.5% of their IRPEF tax to LIFC using fiscal code 80233410580. This is a significant recurring revenue stream at no cost to the donor.
3. Legacy bequests and testamentary donations: LIFC promotes planned giving through testamentary bequests (lasciti testamentari), which are exempt from inheritance taxes. The organization provides guidance and runs dedicated campaigns to encourage legacy donations.
4. Corporate partnerships and cause marketing: Companies sponsor specific projects, launch marketing tied to cause campaigns, engage employees in fundraising, or donate a share of product sales. Corporate partners include Vertex Pharmaceuticals, Novartis, Randstad, and others.
5. E-commerce and solidarity shop: LIFC operates a solidarity shop (Emozioni Solidali) selling branded merchandise and products from partner brands (e.g., Valeria Bugatto Gioielli, Rossorame). Additional revenue comes from charity auctions on eBay and Etwoo platforms.
6. Facebook fundraising tools: Individuals can create personal fundraising campaigns on Facebook in support of LIFC, particularly for birthdays, weddings, or other milestones.
7. Solidarity events and crowdfunding: LIFC organizes and hosts sporting endurance events (125 Miglia per un Respiro, Ironman participation, cycling events) and accepts crowdfunding donations through the Rete del Dono platform.

Pricing tiers

Go-to-market motion3 records

Distribution channels9 records

Marketing channels13 records

Core offering

Lega Italiana Fibrosi Cistica (LIFC) is a non-profit voluntary organization (ODV) that supports people with cystic fibrosis (CF) in Italy through free social, legal, and psychological counseling via its LIFC CARES Social Secretariat, national fundraising campaigns (5x1000 tax designation, 125 Miglia per un Respiro, crowdfunding, testamentary bequests), awareness initiatives, advocacy with Parliament and AIFA, and management of the Registro Italiano Fibrosi Cistica (RIFC) covering approximately 98% of Italian CF patients. The organization operates through 21 regional associations that deliver localized services and partner with corporate sponsors (Vertex Pharmaceuticals, Novartis, Randstad, Mylan) for cause marketing and project funding.

Product overview

Lega Italiana Fibrosi Cistica (LIFC) is a non-profit organization (ODV) operating a portfolio of interconnected digital and service-based offerings. The core digital presence consists of the main website (fibrosicistica.it) serving as the central information hub, complemented by specialized platforms including the online donation portal (dona.fibrosicistica.it) and the solidarity e-commerce shop (Emozioni). The LIFC CARES Segretariato Sociale provides free expert consultations in social work, legal, and psychological support. The organization also maintains the Registro Italiano Fibrosi Cistica (RIFC) national patient registry and organizes the annual Forum Italiano sulla Fibrosi Cistica. Supporting initiatives include the athletic campaign 125 Miglia per un Respiro, the employment portal trovoilmiolavoro.it for patient job placement, housing assistance through CASE LIFC, and telemedicine services for remote patient monitoring.

Differentiator

Problem solved

Functional benefit

Brands

• 125 Miglia per un Respiro: Athletic challenge campaign featuring Alessandro Gattafoni crossing seas in kayak to raise awareness about cystic fibrosis
• LIFC CARES
• Martino
• Registro Italiano Fibrosi Cistica (RIFC)
• Forum Italiano sulla Fibrosi Cistica

Products and services

• LIFC CARES - Segretariato Sociale della Fibrosi Cistica Comprehensive social services program providing free consultation with qualified social workers, lawyers, and psychologists specialized in cystic fibrosis. Delivered via a toll-free hotline (800 912 655), dedicated emails ([email protected], [email protected], [email protected]), in-person consultations at LIFC headquarters, and virtual sessions. For CF patients and their families.
• Emozioni Solidali - Shop Solidale Solidarity e-commerce shop selling branded LIFC merchandise and partner brand products (Valeria Bugatto Gioielli, Rossorame) to raise funds for cystic fibrosis research and patient support. Includes gift donations starting at €10. For consumers and corporate gift purchasers.
• Registro Italiano Fibrosi Cistica (RIFC)
• Forum Italiano sulla Fibrosi Cistica Biennial national forum bringing together CF patients, families, healthcare professionals, researchers, institutional representatives, and associations to discuss CF care, research, policy, and quality of life. Charges a €50 registration fee for non-speaker participants.
• Portale Lavoro (trovoilmiolavoro.it) Dedicated employment portal facilitating employment for young adult CF patients and protected categories. Developed in partnership with Randstad and Seltishub/Jobmetoo. Allows companies to post jobs targeting CF patients and organizes recruiting events.
• CASE LIFC
• Telemedicina per Pazienti Adulti

Quantifiable outcome

• RIFC registry covers 98% of Italian CF population, with 6,182 patients registered in 2024
• +4 more outcomes

Named customers1 record

Segments5 records

Ideal customer profiles3 records

Technology focussed No

API detail

Has API

No

API docs

API detail

Core technology

AI maturity

App detail

Partnerships

Six partnerships are on record, tiered core and minor.

• CONI (Comitato Olimpico Nazionale Italiano)coreStrategic or Co-development Partner · 1 January 2022LIFC and CONI signed a Protocol of Understanding in 2022 (renewable at end of Olympic quadrennial) to promote solidarity culture, CF awareness, and sport as essential therapy for CF patients. The partnership includes joint awareness and education initiatives on CF and healthy lifestyles.
• Legabasket Serie AminorStrategic or Co-development Partner · 1 January 2013Partnership initiated in 2013 for the Basket for Fibrosi Cistica campaign, running for 4 editions. Italian Serie A basketball arenas were illuminated in blue to raise CF awareness. The collaboration leveraged professional basketball's audience reach for CF awareness.
• FIPSAS (Federazione Italiana Pesca Sportiva e Attività Subacquee)minorStrategic or Co-development Partner · 1 January 2011FIPSAS partnered with LIFC in 2011 for the Respiro Sommerso awareness campaign, using the concept of 'breath' to highlight CF respiratory difficulties and promote sport as therapy. In 2012 it financed a physiotherapy scholarship for a CF specialist.
• RandstadcoreStrategic or Co-development PartnerRandstad, a global HR services company, has partnered with LIFC since 2018 to facilitate employment for CF patients. Together they operate the www.trovoilmiolavoro.it portal, where Randstad posts job openings for protected categories. In 2022 they renewed their partnership to include recruiting days, training events, and job orientation programs specifically designed for CF patients.
• Seltishub / JobmetoocoreStrategic or Co-development PartnerSeltishub operates the Jobmetoo platform for disability employment. LIFC and Seltishub signed an agreement for publishing job announcements on www.trovoilmiolavoro.it and for organizing joint recruitment and orientation activities for CF patients.
• Università Telematica Internazionale UninettunominorStrategic or Co-development PartnerLIFC signed a partnership with Uninettuno University offering all LIFC members a 25% discount on annual tuition fees for online master's programs. The goal is to facilitate CF patients' professional development and access to the job market. Students with recognized disability (≥66%) are exempt from tuition fees (only €25 administrative fee).

Scale indicators7 records

Recent moves6 records

Expansion highlights6 records

Others

• European Cystic Fibrosis Society: The pan-European scientific society for CF. LIFC actively participates in ECFS conferences and contributes through the RIFC registry to the European CF Registry. Comparable as an ecosystem partner at the supranational level rather than a direct competitor.

Direct peers

• Parent Project aps: Italian patient association for Duchenne muscular dystrophy. Strong domestic peer given shared Italian rare-disease fundraising, advocacy, and parent-led model with regional branches.
• UNIAMO Federazione Italiana Malattie Rare: Italian federation of rare disease patient associations. Comparable as an Italian nonprofit umbrella organization in the rare-disease advocacy space, representing overlapping patient communities and engaging with AIFA and Parliament on similar issues.
• Vaincre la Mucoviscidose: The French national CF association supporting patients, families, and research. Directly comparable as another major European national CF patient organization with a similar mix of fundraising, family services, and research funding.
• Cystic Fibrosis Trust: The UK national CF charity providing patient support, information, research funding, and advocacy. Closest international peer to LIFC in mission, services portfolio, and operating model for a single national market.
• Cystic Fibrosis Canada: Canada's national CF charity funding research and patient support. Directly comparable mission and operating model, with a regional association network similar to LIFC's 21 regional associations.
• Mukoviszidose e.V. The German national CF association (Bundesverband). Comparable European national CF patient organization providing research funding, regional structure, and patient services in a larger national market.

Regional players

• Cystic Fibrosis Ireland: The Irish national CF charity. Comparable as a smaller European national CF patient organization focused on advocacy, services, and research funding in a single-country market.
• Asociación Española de Fibrosis Quística: The Spanish national CF patient association. Comparable mission as a regional (Iberian) peer not competing in Italy, but operating similar patient support, regional structure, and awareness campaigns.

Broad incumbents

• Cystic Fibrosis Foundation: The US national CF patient advocacy and research-funding organization. Directly comparable to LIFC as a national CF patient association, but materially larger in scale, with a venture philanthropy model (e.g., Vertex partnership origins) that LIFC mirrors in a smaller Italian context.

Market position

Strengths5 records

Weaknesses5 records

Competitive moat5 records

Key risks5 records

Key highlights7 records

Customer concentration

• Facebookfacebook.com/legaitalianafibrosicisticaonlus
• Instagraminstagram.com/legaitalianafibrosicistica
• LinkedInlinkedin.com/company/lifc-onlus

Compliance1 record

Revenue estimate

Valuation estimate

Number of profiles

Profiles4 records

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 Lega Italiana Fibrosi Cistica