Fundación Francisco Luzón

What Fundación Francisco Luzón does

Fundación Francisco Luzón is an independent Spanish non-profit foundation founded in 2016 by Francisco Luzón, a former senior banker at BBVA and Banco Santander, after his diagnosis with Amyotrophic Lateral Sclerosis (ALS). Headquartered in Madrid at Paseo de Eduardo Dato 3, the foundation operates with approximately 15 employees (seven named on its website) and a Board of Trustees led by Executive President Estíbaliz Luzón Gómez. Its mission is to improve quality of life for ALS patients and accelerate research toward a cure, targeting an estimated 3,603 ALS-affected individuals in Spain according to its V Observatorio ELA 2024 report.

The foundation's product portfolio spans research grants (Ayudas Unzé-Luzón, Becas Talento ELA), clinical infrastructure (Plataforma Registro Nacional de ELA hosted on the GENRARE platform, TRICALS-linked clinical trials such as Magnet and Lighthouse II, and the SEED-ALS consortium covering 13 autonomous communities), education (EscuELA e-learning platform, "Conoce la ELA" workshops), observational intelligence (annual Observatorio ELA reports), and an AI-powered research initiative (Proyecto Savana applying NLP to clinical reports). It has secured Fundación Lealtad accreditation for transparency and governance.

Revenue is generated entirely through voluntary contributions: one-time and recurring donations, a membership program (Hazte socio/a), solidarity challenge events, charitable celebrations in lieu of gifts, and testamentary bequests. Institutional funding comes via co-funded research partnerships, most notably Fundación 'La Caixa' for TalentoELA (€3M over five years, renewed in 2023) and contributions to European platforms (€300K to PRECISIONALS, €50K/year to SEED-ALS, €90K to the National Registry). The foundation's go-to-market is community-led, combining digital channels (website, Instagram, email newsletter), earned media, international scientific congresses (Encuentro Internacional de la ELA, CincELA), and Sosanitario training workshops to engage patients, families, researchers, healthcare professionals, and donors across Spain.

Name

Fundación Francisco Luzón

Legal name

Fundación Francisco Luzón

Website

https://ffluzon.org

Company type

Private

Founded year

2016

Operating status

Operating

Headcount range

11–50 employees

Short description

Fundación Francisco Luzón is a Madrid-based non-profit foundation founded in 2016 that funds ALS research, supports patients and families, and publishes the annual Observatorio ELA report. It runs grant programs, the EscuELA education platform, a national patient registry, and European clinical trial collaborations.

Ownership category

akta.pro rank

Product category

Nonprofit Healthcare Foundation

NAICS

Grantmaking Foundations (813211), Voluntary Health Organizations (813212)

SIC

Services-Membership Organizations (8600), Services-Engineering, Accounting, Research, Management (8700)

akta.pro primary industry

Disease-Specific Research & Support (e.g., Cancer, Diabetes, ALS) (BPAGACAA)

akta.pro secondary industry

Health & Medical Research Grantmaking Foundations (BPAGAKAL)

Keywords

• ALS research funding
• Patient support services
• Nonprofit healthcare foundation
• Disease awareness advocacy
• Clinical research collaboration

Headquarters

HQ city

Madrid

HQ country

Spain

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. Donations: The foundation receives one-time and recurring donations from individuals who support ALS research and patient care. Donors can make contributions through the website and receive tax benefits under Spanish philanthropy laws (80% deduction for donations up to €250, 35-40% for larger donations).
2. Membership Program: The foundation offers a membership program where supporters pay periodic contributions in exchange for exclusive communications, priority access to events, and tax benefits.
3. Challenge Events: The foundation organizes and benefits from solidarity challenges and events where participants raise funds through athletic or creative activities.
4. Charitable Celebrations: Individuals can organize solidarity celebrations (birthdays, weddings, anniversaries, graduations) where guests donate to the foundation instead of giving gifts.
5. Legacy Bequests: The foundation accepts testamentary legacies and inheritances where donors include the foundation in their wills as a beneficiary.

Go-to-market motion1 record

Distribution channels1 record

Marketing channels8 records

Core offering

An independent nonprofit foundation that funds Amyotrophic Lateral Sclerosis (ALS) research through competitive grants and fellowships, supports ALS patients and families through education and resource programs, and advocates for ALS awareness and policy reform in Spain. The foundation operates research grants (Ayudas Unzué-Luzón, Becas Talento ELA), an online learning platform (EscuELA), a national patient registry, European clinical trial collaboration (TRICALS), and annual scientific congresses.

Product overview

Fundación Francisco Luzón operates as a unified non-profit foundation offering a portfolio of interconnected programs focused on ALS research, patient quality of life, and disease visibility. The core offerings include competitive research grant programs (Ayudas Unzué-Luzón and Becas Talento ELA), an online education platform (EscuELA), clinical data infrastructure (Plataforma Registro Nacional de ELA), European clinical trial collaboration (TRICALS), and a national researcher network (Red Española de Investigación en ELA). Supporting services include patient resource maps, training workshops, an annual observatory report on ALS in Spain, international scientific conferences (Encuentro Internacional and CincELA), and innovative AI-powered research projects like Proyecto Savana.

Differentiator

Problem solved

Functional benefit

Products and services

• Ayudas Unzué-Luzón Research Grants Program A competitive grant program funding ALS research projects in Spain, conducted in collaboration with Instituto de Salud Carlos III (ISCIII) for independent scientific evaluation and follow-up. The program supports projects focused on understanding ALS causes, developing biomarkers, and implementing clinical treatments.
• Becas Talento ELA Fellowship program co-created with Fundación 'La Caixa' to fund innovative three-year ALS research projects in biomedicine. The foundation contributes 125,000 euros per awarded project, with additional funding from 'la Caixa'.
• EscuELA Online Training Platform

Quantifiable outcome

• 10 years of continuous operation supporting ALS research since 2016
• +2 more outcomes

Named customers2 records

Segments3 records

Ideal customer profiles4 records

Technology focussed No

API detail

Has API

No

API docs

API detail

Core technology

AI maturity

App detail

AI capability2 records

Partnerships

Ten partnerships are on record, tiered core and minor.

• Fundación 'La Caixa'coreStrategic or Co-development Partner · 1 January 2017Joint collaboration creating the TalentoELA scholarships program, with 3 million euros funded over 5 years. The foundation contributes 125,000 euros per awarded project while Fundación La Caixa provides the remainder. The collaboration was renewed in 2023 for another 5-year period to continue supporting ALS research.
• Instituto de Salud Carlos III (ISCIII)coreStrategic or Co-development PartnerCollaboration for evaluating applications and conducting scientific follow-up for the Unzué-Luzón Research Project Grants program. ISCIII provides independent assessment of research proposals.
• TRICALS (European Consortium for Clinical Trials in ALS)coreStrategic or Co-development PartnerEuropean consortium of ALS clinical trials integrating leading ALS experts, patients, patient advocacy groups, and ALS foundations. Raquel Barajas Azpeleta serves as the TRICALS liaison in Spain. Foundation funds clinical trials in Spain through this consortium.
• Fundación Ramón ArecescoreStrategic or Co-development PartnerAnnual co-organization of the International ALS Meeting in Spain, bringing together nationally and internationally recognized scientists to discuss ALS research advances and challenges.
• ConELA - Confederación Nacional de Entidades de ELAcoreStrategic or Co-development PartnerNational confederation of ALS entities created in 2022 to become the main interlocutor before public administrations, improve quality of life for ALS patients, and give voice to the collective at the national level.
• CIBERER (Centro de Investigación Biomédica en Red de Enfermedades Raras)coreStrategic or Co-development PartnerCollaboration on the National ALS Registry Platform, with the registry hosted on the GENRARE platform for genetic and rare diseases. Foundation contributes 50,000 euros annually for data collection.
• CIBERNEDcoreStrategic or Co-development PartnerCollaboration through the SEED-ALS consortium coordinated by CIBERNED's Scientific Director Dr. Adolfo López de Munain. The consortium involves 16 clinical groups and 11 translational research groups across Spain.
• PRECISIONALS (European ALS Patient Platform)coreStrategic or Co-development PartnerEuropean platform for clinical and socio-economic data collection and analysis. Foundation has contributed 300,000 euros to date to support this initiative for comprehensive patient data.
• Ministerio de Asuntos Exteriores, Unión Europea y CooperaciónminorOthersSupport for sosanitary training workshops 'Conoce la ELA' for healthcare professionals across Spain.
• Ministerio de Educación y Formación ProfesionalminorOthersSupport for the 'Escucha mis ojos' training workshop for ALS patient communication needs.

Scale indicators10 records

Recent moves6 records

Expansion highlights6 records

Broad incumbents

• International Alliance of ALS/MND Associations: Global umbrella organization for ALS/MND patient associations and research foundations, of which Fundación Luzón is a candidate partner/member. Provides international coordination rather than direct grantmaking, complementing Fundación Luzón's Spain-focused programs.
• Asociación Española Contra el Cáncer (AECC): Spain's largest health-focused nonprofit, operating across research funding, patient support, and policy across all cancers. Useful comparable for governance, donor engagement, and corporate partnership models at Spanish nonprofit scale, though addressing a different disease.

Direct peers

• ALS Therapy Development Institute: US-based nonprofit biotech focused entirely on ALS drug discovery and preclinical research. Closely comparable to Fundación Luzón's TalentoELA and Ayudas Unzué-Luzón research grantmaking model, though ALS TDI operates its own laboratory rather than only funding external research.
• Project ALS: US-based nonprofit funding collaborative ALS research at major academic centers. Comparable grantmaking-plus-advocacy model to Fundación Luzón, with similar scale and reliance on private philanthropy.
• The ALS Association: The leading US-based ALS nonprofit, funding global research, care services, and policy advocacy. Highly comparable mission structure to Fundación Luzón (research grants, care services, advocacy), with the only major difference being US scale and geographic focus.

Regional players

• ARSLA (Association pour la Recherche sur la SLA): France's primary ALS research and patient support foundation, with similar mission pillars (research funding, patient aid, advocacy) to Fundación Luzón. Geographic neighbor and natural potential partner in European ALS initiatives.
• Motor Neurone Disease Association: The UK's leading MND/ALS nonprofit, funding research, care services, and campaigning. Highly comparable mission, programs, and structure to Fundación Luzón, but operating in the UK rather than Spain.
• ALS Liga Belgium: Belgian ALS patient and research foundation with national remit and similar programs (research funding, patient support, advocacy). Comparable structure, smaller geography.

Market position

Strengths5 records

Weaknesses5 records

Competitive moat5 records

Key risks6 records

Key highlights7 records

Customer concentration

• Instagraminstagram.com/fundacion.luzon
• LinkedInlinkedin.com/company/fundaci%C3%B3n-francisco-luz%C3%B3n

Revenue estimate

Valuation estimate

Number of profiles

Profiles11 records

Funding overview

Funding rounds

Investors

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M&A

Investments

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Frequently asked questions about Fundación Francisco Luzón