Educational resources and publications allow healthcare providers to stay up-to-date on the latest medical or treatment guidance/recommendations, as well as help meet the information needs of their patients. NBDF has resources especially targeted to health care providers at HTCs, along with information for providers who may be new to the field of hematology and coagulation disorders.

What resources are available to healthcare providers? (HCPs)

Whether you are new to bleeding disorders as an HCP, just in need of a refresher on a particular topic, or want to take a deeper dive on a particular subject, NBDF has a variety of easily accessible resources for you.

A great place to start is NBDF’s Medical and Scientific Advisory Council (MASAC). Their communications cover a wide range of medical issues related to hemophilia and other bleeding disorders. MASAC has also produced a detailed list of FDA-approved treatment products currently available in the U.S. with a variety of treatment indications for patients with bleeding disorders.

If you are interested in web-based learning opportunities, then visit NBDF’s Visit Online Education Activities for Providers page to access our current virtual education offerings. Note that many of these activities are available for continuing education credits and that the page is periodically updated with new content.

I am a nurse. Are there resources specific to my specialty that I can access?

Yes! For 25 years and counting, the Nurses’ Guide to Bleeding Disorders continues to be a go-to training resource, covering a series of key topics in nursing management, each separated by chapters in PDF. You may also visit NBDF’s Nursing homepage, which includes a range of guidelines and other resources for nurses working in bleeding disorders care.

I am a physical therapist. Are there resources specific to my specialty that I can access?

Yes! Visit NBDF’s Physical Therapy homepage to explore and access a diverse set of resources and information to complement your work with inheritable bleeding disorders patients, such as the MASAC-approved physical therapy guidelines.

I am a social worker. Are there resources specific to my specialty that I can access?

Yes! We encourage you to explore NBDF’s Social Work homepage to find a host of resources and other relevant information to help you enhance your practice.

I am a healthcare provider (HCP) seeking to better understand the novel therapies being used to treat hemophilia. Where can I obtain more information?

HANDI can direct you to a variety of resources and educational offerings to help you get ‘up-to-speed' on novel therapies, including useful background information and guidelines.

MASAC Recommendations on Hemophilia Treatment Center Preparedness for Delivering Gene Therapy for Hemophilia (2023) covers the five main components of preparedness including education and institutional training; patient eligibility; insurance authorization and support; procurement and administration; patient monitoring and follow-up.

“Emerging Clinical Issues in Novel Treatment Modalities,” encompasses a series NBDF launched to educate physicians and other prescribers who regularly treat individuals living with hemophilia.

“The Evidence for Shared-Decision Making for Hemophilia Gene Therapy,” outlines key context and considerations for fostering patient-clinical partnerships in the age gene therapy. 

“Integrated Interprofessional Pathway for Gene Therapy: A Model to Optimize Care in Hemophilia,” is an accredited educational activity designed to help healthcare providers fully incorporate gene therapy into the collaborative care model.

“Advancements in Treatment for Bleeding Disorders” highlights some of the new treatment options on the horizon for inheritable bleeding disorders.

The Partners in Bleeding Disorders Education Program promotes excellence in care through education created by and for the federally recognized Hemophilia Treatment Center Network and providers from other disciplines that manage patients with coagulation disorders. Visit "Partners," to learn more about ‘in-person’ training and online learning opportunities, including modules on gene therapy.

You may also access this link to view a complete list of all FDA-approved therapies to treat inheritable bleeding disorders.

Are there other learning and training opportunities for healthcare providers (HCPs) that you can share with me?

Yes, you are in luck! Listed below are several avenues to pursue HCP education.

 

NBDF’s Annual Bleeding Disorders Conference (BDC) presents a several opportunities for HCPs, including distinct education tracks for physicians, nurses, physical therapists, and social workers. Learn more!


The Partners in Bleeding Disorders Education Program provides comprehensive training and education on a broad range of subjects, delivered in various formats including both in person and virtual, enduring, and live formats.


The Research Journal Club brings researchers and community members together via quarterly online gatherings to explore the latest science and innovative breakthroughs. Participants discuss notable publications from top-tier peer-reviewed journals to encourage debate and networking. While registration is required, the meetings are free to attend.


Comprehensive virtual training on point-of-care musculoskeletal ultrasound (MSKUS) is available through the UC San Diego School of Medicine. The CME accredited curriculum focuses on the use of MSKUS for the evaluation of primary joints, including the ankles, knees, and elbows.


Learn about other associations that focus on research and advancement of care for people with bleeding disorders.


Be sure to explore “Emerging Clinical Issues – Improved Clinical Management of Women and Girls Diagnosed with a Bleeding Disorder." It includes a series of videos that covers four key areas of diagnostic testing and management concerns often encountered by the clinicians caring for women, girls, and people with the propensity to menstruate who have also been diagnosed  with von Willebrand disease, hemophilia A, or hemophilia B.”

Can HANDI send me printed materials to display or distribute in my office?

Yes! Printed materials, pending supplies at the time of the request, can be sent for display/distribution to your office. Materials can also be downloaded in PDF format and printed on demand. Please click here to read and download our publications. To further inquire about materials, email us ([email protected]) or call 1.800.424.2634.

Can I suggest materials or resources to be added to the HANDI library?

Yes! We are happy to receive/learn about new journal articles authored by our amazing HCP network, or additional resources for our library. You may email us ([email protected]) or call 1.800.424.2634.

How can I ensure that I receive the latest news and information related to the management of inheritable bleeding disorders?

Sign up to receive the latest news and information via email, including updates on medical advancements, HCP education opportunities, medical recommendations, and advisories, virtual and in-person scientific meetings, and other events. We also encourage you to follow us on LinkedIN, or Twitter or Facebook/Meta.

Additional Resources


Von Willebrand Disease

Access the new international clinical practice guidelines on the diagnosis and management of von Willebrand disease (VWD), which are available in full form and in condensed, “snapshot” versions. The snapshots versions are available in multiple languages, including Spanish, Russian, Arabic, and French.


Women and Girls with Bleeding Disorders

Access Better You Know materials to help you properly screen women and girls that present with symptoms of a potential bleeding disorder. Women with Bleeding Disorders (A Chapter of The Nurses’ Guide to Bleeding Disorders)


Rare Bleeding Disorders

Rare Coagulopathies (A Chapter of The Nurses’ Guide to Bleeding Disorders)


Peer Reviewed Journal Articles

Visit this page to read synopses of relevant articles published in peer reviewed journals, which cover a wide range of topics including shared decision making, gene therapy, health equity, and more.