A rare bleeding disorder in association with carrier mutations in the F9 gene (Xq27.1) encoding coagulation factor IX (FIX) with a biological activity of FIX ≥40 IU/dL and characterized clinically by abnormal bleeding as a result of minor injuries or following trauma surgery or tooth extraction. Spontaneous hemorrhages may occur occasionally. Heavy menstrual bleeding is the most frequent type of bleed in the carriers.
Data from Orphanet are used to provide information on a disease's name, synonym(s), and overview. Reference: Access aggregated data from Orphanet at Orphadata. Orphadata: Free access data from Orphanet. © INSERM 1999. Available on http://www.orphadata.org. Data version October 2024
Newly diagnosed with
Bleeding disorder in hemophilia B carriers?
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Advocacy Organizations
Accessia Health
Accessia Health is a national nonprofit 501(c)(3) organization that provides programs and services to individuals of all ages who are living with a rare or chronic health condition. With 80+ disease programs, we offer case management, education, and financial assistance for health insurance premiums, medication copayments, travel, and other medical expenses. We’re focused on addressing unmet needs in healthcare, including paying for important expenses such as diagnostic tests, durable medical equipment, and more. Our holistic, inclusive, outcomes focused approach offers patients comprehensive support throughout their healthcare journey.
Bleeding Disorders Alliance Illinois
The Bleeding Disorders Alliance Illinois exists to improve the quality of life for the inherited bleeding disorders community by supporting individuals and their families with unbiased information and resources which allows them to live healthy and active lives.
CHES Foundation, Inc
The mission of the CHES Foundation, Inc began with Comprehensive Health Education Services in 2009 to provide nSpiration through Education to families and individuals with chronic conditions such as rare bleeding disorders. We create educational experiences that encompass all aspects of individuals lives from medical treatments, social emotional health and family support to create a community.
Care-for-Rare America Inc
To establish a global alliance in order to identify the genetic causes of rare diseases and develop effective treatments, following a three-stage approach: recognize, understand, cure.
Hemophilia Council of California
The Hemophilia Council of California has a vision for open access to quality innovative care and choice of treatment for all people with bleeding disorders. We accomplish this by advancing the quality of life for bleeding with bleeding disorders through advocacy, education and outreach in collaboration with our founding member organizations.
Hemophilia Foundation of Northern California
The Hemophilia Foundation of Northern California (HFNC) serves the needs of people impacted by bleeding disorders through enhancing quality of life by providing support, education, outreach, advocacy and research through our affiliated national foundations.
Hemophilia Foundation of Southern California
“Improving the quality of life and building community for those living with inherited bleeding disorders in Southern California.”
Hemostasis and Thrombosis Center of Nevada
The Hemostasis & Thrombosis Center of Nevada (HTCNV) is Nevada's only federally designated hemophilia treatment center (HTC). We provide care for benign inherited blood disorders specifically bleeding disorders, thrombotic disorders and sickle cell disease. Our mission is to provide access to compassion evidence based quality care to all patients in Nevada regardless of their ability to pay.
National Center of Hematology and Blood Transfusion
Treatment of patients with blood diseases,scientific-research works
National Hemophilia Foundation
The National Hemophilia Foundation (NHF) is dedicated to finding cures for inheritable blood disorders and to addressing and preventing the complications of these disorders through research, education, and advocacy enabling people and families to thrive.
New York City Hemophilia Chapter
NYCHC’s mission is to foster a sense of community amongst people affected by bleeding disorders in the greater NYC area, and to improve their health outcomes and quality of life
OPFORD Foundation
OPFORD.org (Open Platform for Rare Diseases) was conceived as a digital and online resource centre for orphan diseases with a primary focus of serving patients and caregivers by connecting them to curated resources regarding symptoms, causes, diagnosis and treatment. We have expanded our services to health counselling and guidance for patients and caregivers to prevent possible complications.
Save One Life, Inc
Empowering individuals and families affected by bleeding disorders in developing countries through direct financial assistance and access to medical treatment.
Syndromes Without A Name (SWAN) Australia
Provide information, support and advocacy to families caring for a child with an undiagnosed or rare genetic condition.
Youth And Women for Opportunities Uganda-YWOU
Our mission supports Rare, orphan and undiagnosed diseases diagnosis, care and treatment, education, awareness and empowering health care professionals and patients care takers of rare, orphan and undiagnosed diseases arena in Uganda, build capacity and bridge lack of clinical knowledge and experience and provide search/quest for diagnostic laboratories, I advocate for changes in laws, practices
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Clinical Trials
For a list of clinical trials in this disease area, please click here.