Bleeding Disorders I Hemophilia

The MBDC providers comprehensive annual clinic visits for our patients and additional appointments on an as-needed basis. The annual visit is recommended for all patients and is required for those patients who receive medication. Our clinic team includes experts from hematology, nursing, social work, and physical therapy. Referrals and consultations may also be coordinated through the MBDC n areas such as dentistry, genetics, and orthopedics.

MBDC patients have the opportunity to participate in research and registry programs which gather anonymous information from people diagnosed with bleeding disorders from around the country. Research provides insight into better treatment modalities and medications that improve overall patient outcomes.

The MBDC team works with specialty pharmacies to ensure that patients have the right medications at the right time. Our 340B factor program serves as an independent, non-profit, factor delivery service. This program supports the Hemophilia Treatment Center by offsetting the high cost of providing staff and comprehensive services to our patients. Our dedicated pharmacy team works with the clinical team to integrate cost-effective pharmacy services with each patient's medical care. We deliver factor products and supplies with an emphasis on personalized service. Each patient who participates in our 340B factor program is personally guided through the factor product ordering and insurance billing process. 

Our team works with internal and external stakeholders, such as physicians, dentists, and care providers, to ensure our patients have comprehensive care plans for any invasive procedures or surgeries. We help coordinate home factor infusions and outside nursing services when needed and provide these services ourselves when possible. We partner with schools, day care centers, camps, and emergency rooms to provide education so that our patients can be safely treated and evaluated outside the home.

• Counseling and Support
• Home Infusion

 

The MBDC team provides advocacy and education in a number of ways such as:

• Providing patients and community partners with state-of-the-art bleeding management education
• Offering financial counseling and advocacy with public and private insurance payers

Eligible patients are provided the following enhanced services as needed:

• Pediatric dental consultation
• Home visits for teaching purposes
• On-call assistance available 24 hours a day, 7 days a week
• Additional items for special circumstances

Bleeding Disorders

• Hemophilia A (Factor VIII deficiency)
• Hemophilia B (Factor IX deficiency)
• Von Willebrand Disease
• Platelet defects
• Excessive bleeding after surgery
• Other coagulation factor deficiencies (i.e. Factor II, Factor V, Factor VII, Factor X, Factor XI, Factor XII, Factor XIII, dysfibrinogenemia / hypofibrinogenemia)
• Personal history of bleeding tendencies
• Family history of bleeding diathesis
• Other coagulopathy

The Foundation for Women & Girls with Bleeding Disorders (FWGBD) is dedicated to:

• Educating healthcare providers on issues surrounding female bleeding disorders
• Raising awareness of these conditions
• Translating and disseminating information and research to the communities we serve

Through the Women and Girls Clinic the MBDC:

• Evaluates women and girls with a personal or family history of bleeding disorders
• Evaluates and treats women and girls with unexplained menorrhagia (heavy menses) for possible bleeding disorders
• Manages iron deficiency in women and girls
• Consults with a board-certified Obstetrics and Gynecology physician who is a member of the FWGBD and attends MBDC’s Women and Girls Clinics - in collaboration with a hematologist
• Plans and manages bleeding disorders during pregnancy, labor and delivery, and the post-partum period

Patients with bleeding and clotting disorders are primarily cared for by:

• A hematologist (a physician who specializes in blood disorders) and/or
• A nurse practitioner and certified nurses who have specialized education in the care of people with bleeding disorders

As part of the comprehensive care provided, patients may also consult with physical therapists, researchers and social workers who provide psycho-social assessments, counseling, and resource information.