AELMHU (Asociación Española de Laboratorios de Medicamentos Huérfanos y Ultrahuérfanos)

Name

AELMHU (Asociación Española de Laboratorios de Medicamentos Huérfanos y Ultrahuérfanos)

Legal name

ASOCIACIÓN ESPAÑOLA DE LABORATORIOS DE MEDICAMENTOS HUÉRFANOS Y ULTRAHUÉRFANOS (AELMHU)

Website

https://aelmhu.es

Company type

Private

Founded year

2011

Operating status

Operating

Headcount range

1–10 employees

Ownership category

akta.pro rank

GTM type

B2B

Offering type

Services

Cost components

Personnel, Operations, Marketing or Sales, Others

Core offering

AELMHU is a non-profit industry association that represents pharmaceutical companies specialized in rare and ultra-rare diseases in Spain. Its core offering consists of knowledge-generation deliverables (quarterly and annual Access Reports on orphan drugs in Europe and Spain, and an annual Clinical Trials Report for rare diseases in Spain), stakeholder events (annual Advanced Therapies Conference, Premios AELMHU awards), policy guidance (Recomendaciones sobre Enfermedades Raras and the Decálogo de Medicamentos Huérfanos), a restricted members portal (Zona Socios), and a communications/newsletter service. These services support institutional dialogue, policy advocacy, and improved patient access to orphan and ultra-orphan therapies.

Product overview

AELMHU is a non-profit association of pharmaceutical companies specializing in rare diseases. Rather than offering a unified software product, the association provides a portfolio of informational and advocacy services including: quarterly and annual Access Reports on orphan drug availability in Europe and Spain, Clinical Trials Reports tracking research in Spain, an annual Advanced Therapies Conference, the AELMHU Awards program recognizing achievements in rare disease research, technical Recommendations on rare diseases, a Decalogue on Orphan Medicinal Products, a Members Area portal, and a communications/newsletter subscription service. These services are designed to support knowledge generation, stakeholder dialogue, and advocacy for patients with rare and ultra-rare diseases.

Differentiator

Problem solved

Functional benefit

Products and services

• Informes de Acceso (Access Reports) Quarterly and annual analytical reports on access to orphan drugs in Europe and Spain, providing consolidated data on availability and reimbursement of treatments for rare diseases for AELMHU member pharmaceutical companies and institutional stakeholders.
• Informe de Ensayos Clínicos para Enfermedades Raras en España (Clinical Trials Report) Annual report tracking clinical trials for rare diseases conducted in Spain, providing statistical data and analysis on research progress for member companies, regulators, healthcare professionals and patient associations.
• Jornada de Terapias Avanzadas (Advanced Therapies Conference) Annual conference bringing together industry, regulators, healthcare professionals and patient associations to discuss advanced therapies for rare diseases, featuring presentations on scientific developments and therapeutic innovations.
• Recomendaciones sobre Enfermedades Raras (Recommendations on Rare Diseases) Formal technical recommendations and policy positions on issues of special interest to the rare disease sector at regional and national levels, developed by AELMHU for use by regulators, public administration and member companies.
• Decálogo de Medicamentos Huérfanos (Orphan Medicinal Products Decalogue) A foundational decalogue providing fundamental principles and guidance on orphan medicinal products for stakeholders across the rare disease ecosystem, including industry, regulators, patient associations and healthcare professionals.
• Zona Socios (Members Area) Restricted online portal providing AELMHU member pharmaceutical companies with access to exclusive resources, documentation and collaborative tools supporting their participation in the association's activities.
• Comunicación y Newsletter (Communications and Newsletter Service) Subscription-based communications service delivering news, updates and initiatives related to rare diseases and orphan drugs to registered subscribers, including member companies, institutional stakeholders, patient associations and the media.

Segments2 records

Ideal customer profiles2 records

Technology focussed No

API detail

Has API

No

API docs

API detail

Core technology

AI maturity

App detail

Partnerships

Three partnerships are on record, tiered core.

• Plan Estratégico de la Industria FarmacéuticacoreStrategic or Co-development PartnerAELMHU participates as an active member in the Strategic Plan for the Pharmaceutical Industry in Spain, contributing proposals and evidence to consultation and decision-making processes related to rare disease policy and orphan drug access.
• PERTE para la Salud de VanguardiacoreStrategic or Co-development PartnerAELMHU participates in the Strategic Project for Vanguard Health (PERTE), contributing to the development and implementation of healthcare innovation initiatives related to rare diseases and advanced therapies in Spain.
• ERDERA (European Rare Disease Research Alliance)coreStrategic or Co-development PartnerAELMHU participates in ERDERA, contributing to European research collaboration initiatives aimed at advancing knowledge and treatments for rare diseases across the continent.

Recent moves6 records

Expansion highlights4 records

Emerging players

• EUCOPE (European Confederation of Pharmaceutical Entrepreneurs): European association representing small and mid-sized innovative pharma companies, including those focused on rare and orphan drugs. Comparable as an EU-level industry association with overlapping membership profile and policy focus on orphan drug access.

Broad incumbents

• Farmaindustria: Spanish national trade association representing the broader pharmaceutical industry in Spain. Comparable as a domestic pharma industry interlocutor; AELMHU operates as a specialized sub-segment focused on orphan drugs within the same Spanish policy environment.
• EFPIA (European Federation of Pharmaceutical Industries and Associations): Pan-European pharma industry association. Comparable as an industry convener with EU policy engagement; AELMHU participates in initiatives like ERDERA alongside EFPIA, but EFPIA operates across all therapeutic areas while AELMHU is specialized in rare diseases.

Regional players

• NORD (National Organization for Rare Disorders): US-based national rare disease advocacy organization with a similar mission of advancing access and policy for rare diseases. Highly comparable in function but operates primarily in the US rather than Spain/Europe.
• CORD (Canadian Organization for Rare Disorders): Canadian national rare disease advocacy organization. Functionally similar in role and scope to AELMHU but operating in Canada rather than Spain.

Others

• Orphanet: European reference portal and database for rare diseases and orphan drugs, hosted by the French INSERM. Comparable as a knowledge infrastructure provider for the rare disease ecosystem that AELMHU's report series complements rather than competes with.

Direct peers

• EURORDIS - Rare Diseases Europe: European-level organization representing rare disease patient associations across Europe. Highly comparable to AELMHU as both serve as authoritative interlocutors for the rare disease ecosystem, though EURORDIS is patient-led whereas AELMHU is industry-led.
• Rare Diseases International (RDI): Global alliance of rare disease patient and advocacy organizations. Comparable mission in elevating rare disease policy globally; AELMHU is a national industry voice while RDI operates as a global patient-umbrella.

Market position

Strengths4 records

Weaknesses4 records

Competitive moat3 records

Key risks4 records

Key highlights6 records

Customer concentration

• LinkedInlinkedin.com/company/aelmhu
• Xtwitter.com/AELMHU
• YouTubeyoutube.com/channel/UCx1YZpNiJc0g6e1KzD3T0Xg

Revenue estimate

Valuation estimate

Number of profiles

Profiles2 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 AELMHU (Asociación Española de Laboratorios de Medicamentos Huérfanos y Ultrahuérfanos)