WBDR 2021 Data Report

The World Bleeding Disorders Registry (WBDR) 2021 Data Report provides aggregate data on more than 9,000 people with hemophilia around the globe who are enrolled in the WBDR. The WFH does not engage in the practice of medicine and under no circumstances recommends particular treatment for specific individuals. For diagnosis or consultation on a specific […]

Monitoring Patient Safety in Clinical Trials

Ensuring patient safety is of paramount importance during the clinical trial process. There are many levels of study approval and monitoring to protect the safety of participants in clinical trials, and a system in place for collecting and reporting safety outcomes during a study. The WFH does not engage in the practice of medicine and […]

Patient and Healthcare Provider Roles in Clinical Trials

Participants in clinical trials and health care providers have different roles throughout the clinical trial process. It is important that both are educated and fully understand their roles. The WFH does not engage in the practice of medicine and under no circumstances recommends particular treatment for specific individuals. For diagnosis or consultation on a specific […]

Questions to Ask Before Participating in a Clinical Trial

For people considering participation in a clinical trial, it is extremely important to learn as much as possible about the clinical trial, the care expected, the cost, and the team that will be conducting the trial. It is expected that you will have questions, and essential that your questions are answered. It may be helpful […]

How New Therapies Get Tested in Clinical Trials

For a drug to become a treatment that doctors can prescribe, it must first be tested in a series of clinical trial phases, and then assessed and approved by a regulatory agency. Each clinical trial phase has a purpose, and the phases progress in order from Phase 1 to Phase 4. The WFH does not […]

WFH Gene Therapy Registry – User guide for people with hemophilia

This document is an introductory guide for people with hemophilia who wish to join the World Federation of Hemophilia (WFH) Gene Therapy Registry (GTR). It answers basic questions about the registry, its purpose, and what participants can expect. Please reach out to WFH with questions regarding participation in the registry at [email protected] WFH Gene Therapy […]

WFH Gene Therapy Registry – User guide for hemophilia treatment centres

The World Federation of Hemophilia (WFH) Gene Therapy Registry (GTR) welcomes the participation of all Hemophilia Treatment Centres (HTCs) involved in gene therapy. This includes HTCs that administer gene therapy and those that manage or follow-up with patients who have received gene therapy at other centres. This user guide will orient HTCs to the WFH […]

Guidelines for the Management of Hemophilia – Portuguese

The 3rd edition is available in: English, French, Spanish, Arabic, Russian The 3rd edition has also been translated into the following languages, with permission from the WFH, by NMOs/Other Organizations: Ukrainian The 2nd edition is available in: Simplified Chinese The 2nd edition has also been translated into the following languages, with permission from the WFH, […]

Frequently Asked Questions on Women and Girls with Bleeding Disorders – German

This document is also available in: English, French, Spanish This is not an official WFH translation. This resource has been translated with permission, and is shared here with their kind permission. Translating organizations are encouraged to have translations reviewed by local experts, the WFH is not responsible for the translation or for any errors or […]

Psychosocial Resource Hub

The WFH Virtual Workshops for Psychosocial Professionals series was developed in collaboration with the WFH Psychosocial Committee. The series targets professionals who work with people with bleeding disorders and aims to provide useful and practical tools for their work. The topics covered in this educational series are based on the modules of the WFH Standardized […]

Report on the Annual Global Survey 2020

The Report on Annual Global Survey (AGS) includes demographic and treatment data, providing a global snapshot of people with hemophilia, von Willebrand disease, other rare factor deficiencies, and inherited platelet disorders around the world.