APELA | Associação Portuguesa de Esclerose Lateral Amiotrófica (ELA)

What APELA | Associação Portuguesa de Esclerose Lateral Amiotrófica (ELA) does

APELA — Associação Portuguesa de Esclerose Lateral Amiotrófica — is a Portuguese non-profit association founded in 1997, headquartered in Lisbon with a delegation in Porto, dedicated to supporting patients with Amyotrophic Lateral Sclerosis (ALS or ELA) and their families. The organization operates as an IPSS (Instituição Particular de Solidariedade Social) and certified NGO for people with disabilities, employing approximately 20 staff and delivering a multidisciplinary service portfolio that includes physiotherapy, speech therapy, occupational therapy, psychological support, social services, caregiver training, and the provision of assistive products and technical aids.

Its core service offering combines direct patient and family support (clinical, psychological, social) with an institutional advocacy function targeting Portuguese health policy, including active petitioning around the Statute of Informal Caregiver and the Via Verde ALS care pathway. APELA also operates an assistive technology track through its participation in the HALO and ACAPELA projects, which develop EMG-based communication interfaces for patients with motor limitations.

APELA's business model is a non-profit funding model composed of multiple streams: IRS tax consignation (0.5–1% of personal income tax allocated by Portuguese taxpayers), individual and corporate donations, membership fees, project grants, and award prizes (including the 2024 Prémio Fidelidade Comunidade and the 2024 Ardonagh Community Trust Grant). The organization is integrated into European research infrastructure via participation in the ERN EURO-NMD reference network and the BRAINTEASER AI-driven ALS disease monitoring consortium, while maintaining commercial partnerships with healthcare companies including Zambon, Philips, Resmed, Linde Saúde, Bayer, and Fidelidade. Strategic positioning increasingly combines service delivery, disease awareness (e.g., National ALS Day 'ELA 360' co-organized with Zambon in 2025), and clinical research participation.

Name

APELA | Associação Portuguesa de Esclerose Lateral Amiotrófica (ELA)

Legal name

APELA - Associação Portuguesa de Esclerose Lateral Amiotrófica

Website

https://apela.pt

Company type

Private

Founded year

1997

Operating status

Operating

Headcount range

11–50 employees

Short description

APELA is a Portuguese non-profit founded in 1997 that delivers multidisciplinary clinical, psychological, and social support services to ALS patients and their families across Portugal, while advocating for caregiver policy and participating in European ALS research consortia.

Ownership category

akta.pro rank

Product category

Neuromuscular Disease Patient Support Services

NAICS

Individual and Family Services (6241), Services for the Elderly and Persons with Disabilities (62412), Offices of Physical, Occupational and Speech Therapists, and Audiologists (62134)

SIC

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

akta.pro industry

PRIMARYEDAFAKAB

AAC (Augmentative & Alternative Communication) & Speech/Language Therapy Tech

Education/Education Technology (EdTech) & Digital Learning/Accessibility, Assistive Technology & Special Needs EdTech

SECONDARYEDAKAGAF

Adaptive Physical Education (APE) Collaboration & Motor Skills Support

Education/Special Education & Learning Support Services/Physical Therapy (PT) Services (School-Age)

Keywords

• ALS patient support
• Neuromuscular disease association
• Caregiver training
• Multidisciplinary care
• Assistive communication

Headquarters

HQ city

Lisbon

HQ country

Portugal

HQ region

Europe

Offices2 records

Markets served

GTM type

B2C

Offering type

Services

Cost components

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

Revenue model

1. Donations and Charitable Contributions: APELA relies on donations from individuals, companies, and charitable trusts to fund its operations and patient support services. The association receives support from corporate partners and community fundraising initiatives.
2. IRS Tax Consignation: Portuguese taxpayers can consign 0.5% (and later 1%) of their IRS to APELA through the annual tax return process, providing a regular funding stream without cost to the donor. Campaigns run from April 1 to June 30 each year.
3. Partnership Grants: APELA receives grants and sponsorships from pharmaceutical companies (Zambon), healthcare companies, and corporate partners for specific projects, events, and operational support.
4. Membership Fees: The association has members (associados) who pay membership fees, though the website indicates a 'reserved area' for members suggesting special access or services for paid members.

Go-to-market motion1 record

Distribution channels3 records

Marketing channels7 records

Core offering

APELA provides free multidisciplinary care and support services to people diagnosed with Amyotrophic Lateral Sclerosis (ALS/ELA) and their families across Portugal, including physiotherapy, speech therapy, psychological support, social work assistance, caregiver training, and provision of assistive communication and mobility products. The association also conducts awareness campaigns, advocates for patient rights at political level, and partners in European research initiatives such as BRAINTEASER (AI patient monitoring) and HALO (EMG-based communication interfaces).

Differentiator

Problem solved

Functional benefit

Products and services

• Physiotherapy Services In-person and home-based physiotherapy delivered to ALS patients at APELA's Lisbon and Porto offices, focused on mobility preservation, respiratory function support, and quality of life.
• Speech Therapy Services Speech therapy for ALS patients, including support for communication, swallowing, and AAC (Augmentative and Alternative Communication) devices.
• Psychological Support Services Psychological counselling and emotional support for ALS patients and their families to address the psychosocial impact of the disease.
• Social Work Assistance Social worker assistance to help ALS patients and families navigate healthcare, assistive product systems, and social security entitlements; also contributes to public policy advocacy on the Informal Caregiver Statute.
• Assistive Product Provision (AAC, eye-tracking, mobility aids) Provision of and access to assistive products including Augmentative and Alternative Communication (AAC) systems, speech-generating devices, eye-tracking communication interfaces, and mobility aids for ALS patients.
• Caregiver Formation Course (4th edition) Structured training course for informal caregivers of ALS patients, co-developed with Santa Maria Health School, Escola Superior de Enfermagem do Porto, and CESPU; 4th edition running from 9 September to 16 December 2025.
• Educational Cycle 2025 – Capacitar para Cuidar: ELA em Foco Cycle of educational sessions titled 'Capacitar para Cuidar: ELA em Foco' (Empowering to Care: ELA in Focus), aimed at ALS patients and caregivers, running from 27 November to 18 December 2025.
• APELA Membership (Seja Sócio) Paid membership programme for individuals who wish to formally support APELA's mission, with access to a members' reserved area for additional content and updates.

Quantifiable outcome

• 96% of ALS patients who start AAC (Augmentative and Alternative Communication) use these tools until days before death, proving effectiveness in maintaining communication
• +1 more outcomes

Named customers4 records

Segments3 records

Ideal customer profiles3 records

Technology focussed No

API detail

Has API

No

API docs

API detail

Core technology

AI maturity

App detail

AI capability6 records

Feature2 records

Partnerships

14 partnerships are on record, tiered supporting, core and innovation.

• ZambonsupportingGTM or Marketing Partner · 2 October 2025Pharmaceutical company supporting the National ALS Day 'ELA 360' event in Aveiro, bringing together neurology specialists from across Portugal.
• VENTILAR – Associação Médica de Cuidados RespiratóriossupportingStrategic or Co-development Partner · 9 May 2024APELA supports and promotes the Iberian Congress of Respiratory Care, organized by VENTILAR, focusing on respiratory care for ALS and other neuromuscular diseases.
• Sociedade Portuguesa de Pneumologia (SPP)coreStrategic or Co-development Partner · 21 June 2022Partnership protocol signed on World ALS Day 2022 for collaboration on respiratory care for ALS patients, including the National Registry of ALS Patients Under Home Ventilation.
• BRAINTEASER Project ConsortiumcoreStrategic or Co-development Partner · 1 January 2021International research project (€5.89M budget, 48 months) using AI to monitor ALS and MS patients at home. APELA participates through Mamede de Carvalho representing Portugal. Partners include Universidad Politécnica de Madrid, University of Padova, Instituto de Medicina Molecular, and 8 other European organizations.
• Linde SaúdecoreGTM or Marketing PartnerMajor supporter of APELA's educational initiatives including the Ciclo Informativo Solidário webinar series and ongoing support for patient care programs. Provides platform access (Academia Linde Saúde) for educational sessions.
• PhilipscoreGTM or Marketing PartnerCorporate supporter of APELA's educational webinars and information sessions on ALS care and management.
• ResmedcoreGTM or Marketing PartnerCorporate supporter of APELA's educational webinars and respiratory care programs for ALS patients.
• H+K (Hill+Knowlton Strategies)supportingGTM or Marketing PartnerCommunications and marketing support partner for APELA's awareness campaigns and public relations activities.
• HALO and ACAPELA ProjectsinnovationTechnology or IntegrationHALO is an EMG-based communication interface project. APELA is a partner in both HALO and ACAPELA projects, which develop assistive communication technologies for ALS patients using minimal muscle movement detection.
• Unidade Local de Saúde Amadora/SintracoreStrategic or Co-development PartnerAPELA collaborates with local health units for IV Cardiopneumology Days and multidisciplinary training sessions on ALS care.
• YoungCare Project (European)supportingStrategic or Co-development PartnerEuropean project promoting strategies to improve the situation of informal caregivers and young people needing special care. APELA contributed materials and participated in different project phases.
• ERN EURO-NMD (European Reference Network for Rare Neuromuscular Diseases)coreStrategic or Co-development PartnerAPELA collaborates with the European Reference Network for Rare Neuromuscular Diseases, participating in surveys and initiatives to identify needs and improve care for ALS patients.
• BayersupportingGTM or Marketing PartnerBayer promotes the 'Encontros com Associações de Pessoas com Doença' (Meetings with Patient Associations), where APELA participated representing ALS patients.
• Santa Maria Health School – Escola Superior de Saúde de Santa MariasupportingStrategic or Co-development PartnerPartner in developing the 4th edition of the Caregiver Training Course, providing specialized curriculum for informal caregivers of ALS patients.

Scale indicators4 records

Recent moves6 records

Expansion highlights5 records

Others

• International Alliance of ALS/MND Associations: Global umbrella organization that federates national ALS/MND associations including APELA. Relevant ecosystem peer given APELA's participation in ENCALS and ERN EURO-NMD; useful as a channel for APELA to scale advocacy reach and access international research collaboration.
• ERN EURO-NMD (European Reference Network for Rare Neuromuscular Diseases): European reference network in which APELA participates as a patient advocacy partner. Comparable as an ecosystem stakeholder — APELA coordinates with EURO-NMD on caregiver surveys, care pathway development, and cross-border research — but operates as a network rather than a direct service provider.

Direct peers

• Deutsche Gesellschaft für Muskelkranke (DGM): Germany's largest patient organization for neuromuscular diseases including ALS. Comparable to APELA in mission and advocacy focus, though broader in disease scope (covers all neuromuscular conditions) and larger in scale. Member of ERN EURO-NMD alongside APELA.
• AISLA - Associazione Italiana Sclerosi Laterale Amiotrofica: Italy's primary ALS patient association, a member of the International Alliance of ALS/MND Associations and active in European research consortia including BRAINTEASER. Directly comparable to APELA in mission, multidisciplinary service delivery model, and Italian/Portuguese healthcare system parallels.
• Fundación Española de Esclerosis Lateral Amiotrófica (FundELA): Spanish ALS foundation providing patient support, caregiver services, and research grants in Spain. Closely comparable to APELA in mission, services portfolio (physiotherapy, speech therapy, psychological support), and Iberian regional context, though it operates at larger scale and serves Spain's bigger ALS population.
• Alliance ALS (formerly ARSLA, France): French national ALS association supporting patients, caregivers, and research across France. Directly comparable to APELA in single-disease focus, multidisciplinary service offering (physiotherapy, speech therapy, equipment loans, psychological support), and advocacy for rare disease policy.
• Motor Neurone Disease Association (MND Association, UK): The UK's leading MND/ALS patient advocacy and support charity, providing multidisciplinary care, research funding, and policy advocacy. Directly comparable to APELA as a national single-disease association delivering physiotherapy, speech therapy, equipment, and caregiver support — but operating at significantly larger scale in the UK.

Regional players

• Liga Portuguesa contra as Doenças Reumáticas (LPCDR): Portuguese patient association for rheumatic diseases operating as an IPSS and providing patient support, advocacy, and information services. Comparable to APELA in nonprofit IPSS status, Portuguese regulatory context, and IRS consignation funding model, though focused on a different disease category.
• Associação Portuguesa de Doentes de Huntington: Portuguese rare neurological disease patient association. Comparable to APELA in IPSS/nonprofit structure, Portuguese domestic focus, and rare neurodegenerative disease support services — a useful functional peer for benchmarking operating model and funding strategy in Portugal.

Broad incumbents

• ALS Association (USA): The largest ALS-focused patient advocacy organization globally, with broad research funding, certified treatment centers, and public policy advocacy. Comparable to APELA in core mission but operates at vastly larger scale with a multi-clinic service network rather than APELA's two-office community-led model.

Market position

Strengths4 records

Weaknesses4 records

Competitive moat4 records

Key risks5 records

Key highlights7 records

Customer concentration

• LinkedInlinkedin.com/company/apela

Revenue estimate

Valuation estimate

Number of profiles

Profiles6 records

Funding overview

Funding rounds

Investors

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M&A

Investments

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Frequently asked questions about APELA | Associação Portuguesa de Esclerose Lateral Amiotrófica (ELA)