The World Federation of Hemophilia (WFH) has launched a new registry to help monitor the long-term safety and efficacy of hemophilia gene therapies in people with hemophilia across the globe.
The Gene Therapy Registry (GTR), which is now live,…
Once you have completed your consent and the trial team has confirmed you are eligible to participate, you are ready to join the trial. The actual process will be different for each person, depending on where and how the trial is being conducted and…
Clinical trials are designed with a rigorous timeline and process to collect information about a new intervention. Depending on the goals, your trial may take several months or several years. The expected duration of the trial is usually known at…
There are many reasons why joining in a clinical trial may not be right for you. Maybe you are not eligible for currently available trials, or maybe right now life is just too busy to make time for all the requirements of a trial.
That’s okay!…
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Clinical trial essentials: What you need to know to be a part of the latest research.Many exciting new medicines, devices and procedures have helped improve care for people with bleeding disorders. These advances have been possible because of new…
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Do you or a family member currently have health coverage through Medicaid or the Children’s Health Insurance Program (CHIP)? If so, you may soon need to…
This year, NHF celebrates its 75th anniversary. And in honor of this incredible milestone, NHF is welcoming a new era for the inheritable blood and bleeding disorders community by creating a more equitable future for all. This new moment in time…
While it is well understood that individuals with von Willebrand disease (VWD) will experience a variety bleeding episodes throughout their lifetime, the psychosocial impact of these symptoms has received relatively little inquiry. Greater knowledge…
NHF is proud to participate in #RareDiseaseDay. This special day focuses on raising awareness and generating change for the millions of people across the world living with a rare disease, their families, and carers.
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