Report on the Annual Global Survey 2021

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.

What is gene therapy?

This patient handbook contains basic information about gene therapy for hemophilia. 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 medical problem, the WFH recommends that you contact your physician or local treatment centre. Before administering any […]

Clinical trials for hemophilia

This handbook contains basic information about clinical trials for hemophilia. 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 medical problem, the WFH recommends that you contact your physician or local treatment centre. Before administering any products, […]

Questions to Ask Your Doctor Before Deciding to Take Gene Therapy

For people considering taking gene therapy, it is extremely important to learn as much as possible about if you are a good candidate, what the potential benefits and risks are, and what to expect during the procedure, and essential that your questions are answered. It may be helpful to write down a list of questions […]

WFH Guidelines for NMO Capacity Development

The WFH Guidelines for NMO Capacity Development were created to provide clear benchmarks and a framework for regular assessments to support NMOs in developing their capacities based on best practices in key organizational development areas. The guidelines offer a systematic and participatory approach to organizational capacity development based on a framework for capacity development. It […]

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 […]