EHC Library

EHC Academy Library is a growing collection of educational and advocacy materials developed by and for the bleeding disorders community. This resource hub includes principles of care, toolkits, factsheets, infographics, guides, and more—covering key topics relevant to patients, caregivers, healthcare professionals, and National Member Organisations.

Designed to support informed advocacy and improve access to care, the library provides reliable, up-to-date content to help drive meaningful change across Europe and beyond.

Explore the materials and empower your efforts within the bleeding disorders landscape.

Principles of Care

There have been major advances in the understanding and treatment of patients with bleeding disorders in recent times. As the management of bleeding disorders is complex, it is essential that we work to ensure that patients have access to a range of healthcare services provided by an expert team of multidisciplinary specialists.

The European and International bleeding disorders community of healthcare professionals (HCPs) and patients have on several occasions jointly defined practical optimum standards for ensuring and harmonising treatment and care for patients with bleeding disorders.

These principles of care encompass fundamental guidelines and standards that guide healthcare professionals to help ensure the delivery of high-quality, patient-centered care. These principles are grounded in ethical standards and evidence-based best practices, ultimately providing a commitment to improving patient outcomes.

European Principles of Care for Women and Girls with Bleeding Disorders

European Principles of Haemophilia Care

European Principles of Inhibitor Management (EPIM)

European principles of care for physiotherapy provision for persons with inherited bleeding disorders

Resources

Tools

EHC Booklet on Women with Haemophilia and Female Haemophilia Carriers – 2025

Executive Summaries

Executive Summary – EHC Round Table on Advancing Women’s Health – 25 March 2025

Executive Summaries

Executive Summary “Working Together on Rare Diseases – Shared Decision-Making for Advanced Technologies” Round Table 10 December 2024

NMOs materials

Hämophilie-Blätter Magazine (in German by our German NMO)

NMOs materials

Flyers, brochures, practical information for bleeding disorder patients (in German by our German NMO)

Informational Resource

Hereditary FX Deficiency

Informational Resource

FX in Women and Girls

Informational Resource

Hereditary FX Deficiency – Testing

Informational Resource

Hereditary FX Deficiency – Severity

Tools

EMA Interactive Map on Clinical Trials

Infographic

Extremely Rare Bleeding Disorders – Known Therapy Options in 2025

Infographic

Extremely Rare Bleeding Disorders – Estimated Prevalence in 2025

Informational Resource

Health at a Glance: Europe 2024. A report by OECD on the major post-COVID challenges facing European health systems

Informational Resource

EURORDIS Patient Partnership Hub

Informational Resource

First cross-sectional analysis of quality of care and patient safety in the WHO European Region

Recommendations

EHC response to the European Commission’s consultation on the implementation act on Joint Scientific Consultation for Medicinal Products

Surveys

The EHC annual surveys help us to gather data and real-world evidence informing our work and feeding into consensus recommendations and other decision-making processes. We actively partner closely with broader policy groups including Rare Diseases Europe, the European Patients’ Forum and doctor/trade associations to ensure that the data we collect and analyse can be used where appropriate as effective advocacy tools and resources for our patients.

Completed Surveys