Asociación ELA Argentina

What Asociación ELA Argentina does

Asociación ELA Argentina (legal: Asociación ELA Argentina; also known as Centro de afectados por la Esclerosis Lateral Amiotrófica) is a non-profit civil association (Asociación Civil) headquartered in Buenos Aires, Argentina, at Av. Belgrano 687 8º Piso. The organization is the only national association in Argentina dedicated exclusively to supporting people with Amyotrophic Lateral Sclerosis (ALS/ELA) and their families. It operates through a Federal Program of 27 branches (filiales) spanning all major Argentine provinces — including Bahía Blanca, Bariloche, Córdoba, Mendoza, Rosario, Salta, Tucumán-area cities, and Tierra del Fuego — supported by approximately 10 staff and a network of volunteer referents. Its services are organized into eight program areas: Unidad de Atención ELA (care unit), Comunidad ELA (community), Asistencia Logística (supplies, transport, communication), Defensa de Derechos (rights advocacy), Investigación y Capacitación (research and training), Difusión y Comunicación (outreach), Desarrollo Institucional (institutional development), and Programa Federal (federal program).

The association provides patient guidance, medical consultations, caregiver training, psychological support, social work, home assistance, logistical support with supplies and equipment, legal rights defense (including disability certification under Resolución 322/2023), and access to pharmacological treatments such as Riluzol, Edaravone, and Qalsody (Tofersen). It operates the National ALS Registry (RENELA) in partnership with Argentina's Ministry of Health, conducts research including a 2023 Ministry of Science–backed study on social problems associated with ALS, and is a recruitment site for the PTC Therapeutics CARDINALS Phase 2 trial (NCT05349721) of utreloxastat. It is a member of the International Alliance of ALS/MND Associations and a co-founder of UNELA (Unión Latinoamericana de ELA). The organization has no commercial technology stack, API, or AI components; its primary digital assets are a website, social media presence, the ELA TV program, and a YouTube channel.

The business model is non-commercial. Asociación ELA Argentina is funded through donations, benefactor members, corporate social responsibility partnerships, healthcare insurer/union support (OSECAC, OSPRERA, OSUTHGRA, OSDIPP and others listed as 2026 Plan supporters), charitable events (annual dinners, World ALS Day activities), and grants. All services to patients and families are provided free of charge; no pricing models, contracts, or commercial products apply. Organizational governance is independent and member-based, with no parent company, holding structure, or external investment ownership identified.

Name

Asociación ELA Argentina

Legal name

Asociación ELA Argentina

Website

https://asociacionela.org.ar

Company type

Private

Operating status

Operating

Headcount range

1–10 employees

Short description

Asociación ELA Argentina is a Buenos Aires–headquartered non-profit civil association and the only national organization in Argentina dedicated to supporting people with ALS and their families, operating through 27 provincial branches, the RENELA national registry, and clinical-trial/research partnerships.

Ownership category

akta.pro rank

Headquarters

HQ city

Buenos Aires

HQ country

Argentina

HQ region

Latin America

Offices1 record

Markets served

GTM type

B2C

Offering type

Services

Cost components

Personnel, Operations, Marketing or Sales, Others

Distribution channels3 records

Marketing channels6 records

Core offering

Asociación ELA Argentina is a non-profit civil association that supports people diagnosed with ALS (Amyotrophic Lateral Sclerosis) in Argentina and their families. It delivers direct patient care guidance, caregiver training, logistical/mobility assistance, legal and disability rights advocacy, and community-building services, and maintains a national ALS patient registry (RENELA) along with a federal outreach program.

Product overview

Asociación ELA Argentina is a non-profit civil association (Asociación Civil) that serves as a center for people affected by Amyotrophic Lateral Sclerosis (ELA/ALS). The organization does not offer a commercial product platform but rather provides a comprehensive range of support services including: patient guidance and orientation, medical consultations, caregiver training, logistical assistance with medical supplies, rights advocacy and legal support, research promotion and scientific training, communication and media dissemination, institutional development, and a Federal Program with branches across Argentina. Services are organized into programs including: ELA Care Unit (Unidad de Atención ELA), ELA Community, Logistical Assistance, Rights Defense, Research and Training, Communication and Dissemination, Institutional Development, and Federal Program.

Differentiator

Problem solved

Functional benefit

Brands

• RENELA: Registro Nacional de ELA - the National ALS Registry, a program managed in conjunction with Argentina's Ministry of Health for epidemiological data collection on ALS patients in Argentina.
• ELA TV
• Programa Federal

Products and services

• Unidad de Atención ELA

Quantifiable outcome

• National ALS Registry (RENELA) established in partnership with the Ministry of Health of Argentina

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

Seven partnerships are on record, tiered core and minor.

• PTC Therapeutics (CARDINALS Clinical Trial)coreStrategic or Co-development Partner · 1 January 2022Asociación ELA Argentina collaborates with PTC Therapeutics on the CARDINALS Phase 2 clinical trial (NCT05349721) for utreloxastat (PTC857) in ALS patients. The Argentine recruitment site is IADIN SRL (Instituto Argentino de Investigación Neurológica) at Uruguay 824 1° Piso, CABA.
• International Alliance of ALS/MND AssociationscoreStrategic or Co-development PartnerAsociación ELA Argentina is a member of the International Alliance of ALS/MND Associations, which organizes annual world meetings, webinars, scientific sessions, patient councils, technology advisory councils, and public policy councils. The alliance coordinates global advocacy, research dissemination, and rights surveys for people with ALS worldwide.
• UNELA (Unión Latinoamericana de ELA)coreStrategic or Co-development PartnerUNELA is the Latin American Union of ALS Associations, with a founding meeting held in Santiago de Chile in 2017. It coordinates regional advocacy, research, and support efforts across Latin America.
• Ministry of Health of Argentina (RENELA)coreStrategic or Co-development PartnerRENELA (Registro Nacional de ELA) is the National ALS Registry operated by Asociación ELA Argentina in conjunction with Argentina's Ministry of Health. It includes an epidemiological study of the ALS population in Argentina.
• IADIN SRL (Instituto Argentino de Investigación Neurológica)coreStrategic or Co-development PartnerClinical trial site in Buenos Aires (Uruguay 824 1° Piso, CABA) participating in the CARDINALS Phase 2 clinical trial for utreloxastat (PTC857) in ALS patients. Contact: +54 9 11 5429-3354 / [email protected].
• National and Provincial Public MinistriesminorStrategic or Co-development PartnerPresentation of management projects in collaboration with public sector bodies at the national and provincial level, including ministries and public agencies, for the visibility and protection of ALS patients.
• Healthcare Insurers and Unions (Obras Sociales y Prepagas)minorOthersCollaborates with health insurers and union health plans (OSECAC, OSPRERA, OSUTHGRA, OSDIPP, and others) that appear as supporters of the association's 2026 Plan, facilitating access to health coverage for ALS patients.

Scale indicators2 records

Recent moves6 records

Expansion highlights5 records

Others

• International Alliance of ALS/MND Associations: Global umbrella of ALS/MND patient associations of which Asociación ELA Argentina is a member. Not a direct peer but the natural coordinating body and benchmarking network for the organization.

Direct peers

• Fundación Esteban Bullrich: Argentine foundation established by former senator Esteban Bullrich after his ALS diagnosis, focused on ALS awareness, research and patient support in Argentina. Comparable domestic peer with overlapping mission and recent research collaboration.
• The ALS Association: U.S.-based national ALS patient advocacy and research organization offering patient services, advocacy and research funding. Directly comparable to Asociación ELA Argentina in mission, multidisciplinary care model and policy advocacy, though operating at much greater scale.
• Les Turner ALS Foundation: Chicago-based ALS foundation providing patient services, support and research funding. Comparable in integrated care, research funding and local branch model, though at regional U.S. scale.
• ALS Therapy Development Institute: ALS-focused biotech and research nonprofit that conducts in-house drug discovery. Comparable in mission focus on ALS but differs in being primarily a research engine rather than a patient services organization.
• Motor Neurone Disease Association: UK charity providing care, support and research for people with motor neurone disease (ALS). Comparable mission, branch network, research funding and government advocacy model, with similar nationwide branch infrastructure.
• Project ALS: ALS-focused nonprofit funding research and promoting awareness. Comparable in ALS-only mission and research/advocacy orientation, though lighter on direct patient services than Asociación ELA Argentina.
• ARSLA (Association pour la Recherche sur la SLA): French ALS patient advocacy and research organization. Comparable in combining patient support services with research funding and national advocacy, particularly relevant as a fellow member of the International Alliance of ALS/MND Associations.

Broad incumbents

• Muscular Dystrophy Association (MDA): U.S. neuromuscular disease organization covering ALS alongside muscular dystrophies and related conditions. Comparable in multidisciplinary care, advocacy and research funding, but with broader disease scope and substantially larger resources.

Regional players

• ADELA (Asociación de Esclerosis Lateral Amiotrófica del Perú): Peruvian ALS patient association, fellow UNELA member. Comparable mission and Latin American regional context; useful peer given shared patient population dynamics and coordination through UNELA.

Market position

Strengths4 records

Weaknesses4 records

Competitive moat5 records

Key risks5 records

Key highlights6 records

Customer concentration

• Xx.com/AsociacionELAar
• YouTubeyoutube.com/user/AsociacionELAarg
• Facebookfacebook.com/asociacionelaargentina
• Instagraminstagram.com/asociacionelaargentina
• LinkedInlinkedin.com/company/asociaci%C3%B3n-ela-argentina

Revenue estimate

Valuation estimate

Number of profiles

Profiles5 records

Funding overview

Funding rounds

Investors

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M&A

Investments

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Frequently asked questions about Asociación ELA Argentina