This section contains responses to FAQs from individuals living with an inheritable bleeding disorder or for those who have experienced symptoms and suspect they might have one. Explore this page to learn more about the more common inherited bleeding disorders. Be sure to visit us again as we continue to provide additional answers to FAQs!
Symptoms associated with a bleeding disorder vary from relatively mild (nose bleeds, excessive bruising) to more severe (chronic joint bleeding, menorrhagia), and to life threatening (intracranial, GI bleeds). Bleeding can be triggered by an event such as an injury or can occur spontaneously with no apparent cause.
The type of bleeding disorder will also determine, in part, what symptoms an affected individual will experience.
If you are unsure whether your symptoms are consistent with an underlying bleeding disorder, then you should schedule an appointment at a hemophilia treatment center (HTC). An HTC is a specialized health center dedicated to caring for individuals with inheritable bleeding disorders.
HTCs are part of a federally funded national network and are therefore located across the U.S. They are uniquely structured to provide comprehensive or “integrated” health care, each with a core team consisting of a hematologist, nurse, physical therapist, and social worker. To locate an HTC nearest you, please send an email to handi@bleeding.org, call 1.800.424.2634 on Mondays to Fridays from 9am-5pm EST, or search the HTC Directory.
Receiving an initial diagnosis with a bleeding disorder can be an unsettling and nerve-racking time. We have information on several commonly inherited bleeding disorders, including explanations of inheritance, symptoms, diagnostic tests, and treatments available for your specific condition.
NBDF produces a broad range of educational publications for individuals living with bleeding disorders, their family members, and the public. View a full list of currently available publications.
NBDF has developed a comprehensive website targeted to parents of young children and teens as well as adults living with bleeding disorders at distinct stages of life. On the Steps for Living web page, you will find information categorized from birth to school-aged children, from adult to ‘older-aged’ adult, along with specific resources, guidelines, and many other topical factsheets.
NBDF also has an extensive YouTube page, where we have amassed a collection of educational webinars, recorded conference sessions, public service announcements (PSAs), and community profiles. We encourage you to subscribe or hit “like” on our page to receive the latest videos in your own YouTube feed.
You can also easily sign up to digitally receive the latest NBDF news or to subscribe to our award-winning HemAware magazine.
Yes. They can be diagnosed with hemophilia, even though it is a rare occurrence. A percentage of female ‘carriers’ of the hemophilia gene can be symptomatic and can experience bleeding too. They can also be diagnosed with von Willebrand disease and several other rare disorders with bleeding symptoms that can range from mild to severe.
If you have symptoms consistent with a bleeding disorder, consider visiting NBDF’s Better You Know, which includes a risk assessment, tools, and other information to learn whether you are at risk for a bleeding disorder and the next steps you can take to obtain additional testing and care.
If you have already received a diagnosis, consider exploring NBDF’s Victory for Women initiative, which creates resources and provides support and education for all women and girls in the bleeding disorders community.
Visit our Other Factor Deficiencies page to learn the basics of rare bleeding disorders and to access educational opportunities, including the Rare Bleeding Disorders Education Series.
NBDF has also created several educational resources focused on rare bleeding disorders. Go to our publications listing to access booklets on conditions such as factor VII deficiency, Glanzmann’s Thrombasthenia, and factor XIII deficiency.
You can also learn more about a few of the more common inherited platelet disorders here.
To find your nearest HTC or the contact info for a hematologist specializing in bleeding disorders, you can search the CDC Hemophilia Treatment Center Directory.
If you are searching for a treatment center in another country, we suggest accessing the World Federation of Hemophilia’s Global Treatment Centre Directory.
Prior to engaging in any physical activity, you should speak with your HTC care team, particularly your HTC physical therapist, for guidance. This is especially important if you have not been active for some time.
NBDF has an excellent publication called Playing it Safe - Bleeding Disorders, Sports and Exercise which discusses how individuals with bleeding disorders can safely participate in exercise and sports activities. It is available for immediate download and available in Spanish- Jugando a lo Seguro. Access those publications here.
There is a “Sports Ratings by Activity” document, which rates the risk levels of many activities, ranging from basketball to mountain biking.
There are fitness videos located on the Steps for Living website and additional articles on sports or activities through NBDF’s HemAware.
Since inherited bleeding disorders are lifelong chronic conditions, it is extremely important to educate yourself on how medical costs are billed and how your particular insurance plan reimburses for medical visits, tests, and the high cost of product. Here is a great place to start or continue your learning process.
Whether you are choosing an insurance plan through your employer, the “marketplace”, or considering a managed care plan, you still need to carefully consider what the plan offers, including how much you will pay, the size of the network, and prescription coverage. NBDF has developed a “Personal Health Insurance Took kit” resource to help individuals better understand their individual/family coverage needs and their product costs. It contains worksheets, a glossary of terms, and links to available resources.
Policies related to insurance coverage and reimbursement can change from year to year. Changes can stem from a change in your insurer or provider in your own plan. New legislation at the state level can cause changes too. It is important to stay abreast of these changes; you can do so by checking NBDF’s newsroom or public policy section for updates.
It is strongly advised to consult a hematologist prior to surgery and have them consult with your surgical team. At the very least, one should ensure that their surgeon has connected with their hematologist or primary care physician in advance.
While most surgeries are very serious procedures for people with moderate and severe bleeding disorders, some require a higher degree of preparation such as cardiac surgeries, liver or other organ transplants, or major obstetric procedures. NBDF’s Medical and Scientific Advisory Council has approved certain recommendations related to treatment of hemophilia and other inheritable bleeding disorders. View the list of documents.
NBDF benefits from a robust network of state and local chapters working to improve the lives of people with bleeding disorders. Chapter organizations offer many ways for individuals and families to connect with each other, provide support, advocate for legislative changes, participate in summer camps and other social events. To find a chapter near you, please click here.
If there is not a chapter listed in your state, call 1.800.424.2634.for guidance or contact a neighboring state chapter for more information.
NBDF maintains an ‘Events’ page where you can find notices of upcoming educational conferences, virtual events, webinars, and local chapter events. NBDF has a Twitter and Facebook ‘meta’ page that you can follow too.
Each year, NBDF holds a Bleeding Disorders Conference in which members of the community converge to hear the latest education, connect with healthcare providers and network with stakeholders. In 2024, NBDF's BDC will be held from September 12th-14th in Atlanta, GA. Learn more.
Yes! As a person living with, or caring for, someone with a bleeding disorder, it is important to consider well in advance what resources might be needed in crises and emergencies. You may not always have time to call or speak with your local HTC, and many advise folks experiencing a serious emergency to call 911 directly. All HTCs have phone numbers for day and after-hours contact. We recommend saving these phone numbers and keeping a copy of your insurance ID card. There are additional resources specific to individuals/families affected by bleeding disorders and ‘emergency’ care listed here below.
NBDF’s MASAC document #227 discusses home factor supply for emergency preparedness for patients with hemophilia and other bleeding disorders. Our MASAC document #257 discusses current guidelines for emergency management of individuals with hemophilia and other bleeding disorders.
Steps For Living’s Emergency Preparedness website and the CDC’s webpage on Emergency Preparedness are useful resources too.
For more information about securing the proper medical identification that is critical in medical emergency situations, contact the MedicAlert Foundation.
It is an unfortunate fact that treatment products for hemophilia and other inherited bleeding disorders are not in adequate supply across the world. Securing treatment in one’s own country in circumstances of limited to scarce supply is truly a challenge and often involves complicated matters of political stability, governmental control, the high cost to maintaining product supply or the sheer distances from more rural areas to the main treatment center.
If you are seeking help with an unmet medical need, a good place to start is to see if your country is a National Member Organization (NMO) of the World Federation of Hemophilia (WFH). These organizations are located across the globe, and many represent the primary source of bleeding disorders support for their nation. Search this WFH directory to check for a NMO in your home country.
An important step is to be sure you are aware of the hemophilia treatment center (HTC) medical facilities and hematology specialists located within your own country. To access the full list of recognized HTCs around the world, access this page and download WFH’s Global Treatment Centre Directory.
In addition, WFH’s Humanitarian Aid Program works to improve the lack of access to care and treatment by providing much-needed funding and product support to many countries. It does this work by way of NMOs, HTCs, and through educational conferences and trainings for healthcare providers in emerging countries.
The aid organization Save One Life offers a 1-1 sponsorship program, a global scholarship program, and several other international relief initiatives. It also has a factor donation program and administers product donations through its Project SHARE program. Access this link to learn more about its program and complete a “Factor Donation Request.” Please note that individual donations are filled based upon available supply and a physician contact is needed to submit a request. If you have questions, email share@saveonelife.net.
Please note that NBDF does not provide direct product or financial assistance to individuals. NBDF is not in a position to supply medications of any kind, nor engage in the practice of medicine.
There are several important things to consider if you have a bleeding disorder and are moving to the United States.
The cost of medical care in the U.S. is expensive and even more so for someone with a bleeding disorder. It is therefore critical that individuals traveling to the U.S., first check on their home country’s VISA requirements. It is also important to review your own insurance plan regarding international coverage or obtain temporary health insurance to adequately cover you while staying in the US. If you have been offered a new job in the U.S., then you would need to discuss your health insurance options with your company’s human resources department. If you have been accepted to a college/university or study abroad program in the U.S., then the sponsoring program or institution will need to inform you of potential insurance options.
A majority of U.S. citizens have their medical care “covered” by private insurance provided through their employer or their parent’s employer if the individual is still a dependent under 26 years of age. While federal US government-subsidized assistance programs exist, individuals need to apply first and meet qualifying criteria. Visit the U.S. Department of Health and Human Services website to learn about these programs.
When you are ready to travel to the U.S., it is highly recommended that you bring as much of your factor replacement product as possible with you, along with any other prescription medications. You will also want to be carrying a letter from your physician detailing your diagnosis and corresponding prescriptions. You can view a sample of this letter on the World Federation of Hemophilia website.
Remember to also keep any products in their original packaging when you fly and go through customs.
You are also strongly encouraged to contact the hemophilia treatment center (HTC) in closest proximity to where you will be residing and preferably in advance of your trip. HTCs specialize in providing comprehensive medical care and support for individuals and families affected by inherited bleeding disorders. Access the Centers for Disease Control and Prevention’s HTC Directory to search for the closest center.
An excellent resource is the social worker at the HTC where you are planning to receive care. Social workers are well versed in the complexities of health care coverage and can help you navigate your options and even explain how to apply for qualifying coverage.
HANDI also suggests you become connected with the local bleeding disorder community by contacting the NBDF Chapter in your area. Chapters, located throughout the US, provide key support and networking opportunities for individuals and families. Access this directory to find the chapter nearest to you.
Moving to a new state is an endeavor that comes with its own set of challenges and anxieties. In order to avoid any interruptions to your healthcare, it is important to engage with your new hemophilia treatment center (HTC) or homecare/pharmacy in advance of your move. Access the CDC’s HTC Directory to find a center in your new state.
Because moving to a new state can also have implications for your insurance coverage, including changes to coverage or potential delays, it is very important that you connect with the social worker at your new HTC to anticipate any reimbursement challenges.
Moving is also a great opportunity to meet new people within the bleeding disorders community and grow your support network. NBDF Chapters are here to help you in this endeavor! Find the NBDF Chapter in your new state.
To learn additional tips read the Hemaware article, “Getting Ready for a Move.”
In recent years, several novel therapies to treat hemophilia have come to market, with several more in the pipeline. These new products are developed with increasingly innovative and complex technologies that although very promising, might also leave individual consumers and their caregivers with many more questions.
In light of this, NBDF developed several new resources to help you better understand this rapidly evolving therapeutic landscape. Visit NBDF’s Future Therapies section for a brief overview of the technologies utilized in the development of these new treatments.
When the FDA approved the first gene therapy for adults with hemophilia B followed by the first for hemophilia A, a new treatment era was ushered in, one which raises both questions and even concerns, as patients, families, and healthcare providers engage in better shared decision-making for managing their treatment. NBDF launched a series of “Frequently Asked Questions” specific to gene therapy for hemophilia, plus a glossary of terms.
There are also a series of video presentations designed to help people better understand these therapies. HANDI also suggests perusing content on key related topics such as shared decision making for gene therapy and vector biology.
Access this link to view a complete list of all FDA-approved therapies to treat inheritable bleeding disorders.