HEMOPHILIA B TREATMENT CENTERS:

  • Hemophilia-Treatment-Centers
    A list of treatment centers nationwide with contact information compiled by the Coalition for Hemophilia B.

  • The Hemophilia Alliance
    The Hemophilia Alliance provides member Hemophilia Treatment Centers with resources and services for individuals with bleeding and clotting disorders.

Treatment: 

  • CSL Behring
    This company is a world leader in developing and manufacturing safe and effective therapies to treat and manage bleeding disorders. CSL Behring is currently developing recombinant factor therapies designed to allow hemophilia patients to go longer between transfusions.

  • Aptevo Therapeutics
    Aptevo offers IXINITY, a recombinant factor IX treatment option developed together with the Coalition for Hemophilia B. Aptevo also sponsors the Generation IX Project.

  • International Factor IX Treatment Network
    The International Factor IX Treatment Network is a study group formed with the goal of investigating the treatment and complications of hemophilia B. 

  • Pfizer Pharmaceuticals
    Find more information on Benefix (coagulation factor IX (recombinant)), a once-weekly prophylaxis treatment for hemophilia B.

  • uniQure
    Our mission at uniQure is to deliver potentially curative gene therapies that the lives of patients. uniQure is currently conducting a Phase I/II study in patients with severe hemophilia B and advanced joint disease. 

Educational Resources:

  • Hemophilia Federation of America
    The Hemophilia Federation of America is a national nonprofit organization that assists and advocates for the bleeding disorders community while strengthening support and awareness.

  • LA Kelley Communications
    Experts in hemophilia since 1990, LA Kelley Communications offers many publications, including HemaBlog, for those who are affected by bleeding disorders.

  • National Hemophilia Foundation
    NHF is dedicated to education, advocacy, research, and finding better treatments and cures for inheritable bleeding disorders.

  • World Federation of Hemophilia
    For over 50 years, WFH has provided global leadership to improve and sustain care for people with inherited bleeding disorders, including hemophilia.

Scholarships:

  • Education Advantage Scholarship Program
    This scholarship program is open to people with hemophilia A or B. Multiple scholarships will be awarded from $150-$7,000.

  • The Soozie Courter Hemophilia Scholarship Program
    To be eligible for this scholarship, students must have hemophilia A or B, must be a high school senior, have a GED, or be currently enrolled in an accredited college, university, or vocational school. Click for application information.

Insurance and Benefits Resources:

  • Grifols Patient Assistance
    For patients using PROFILNINE who are uninsured or experiencing a temporary lapse of insurance coverage. 1-844-MYFACTOR (1-844-693-2286).
  • Grifols Factors for Health Program
    Comprehensive Customer Focused Care. To enroll in copay or other patient services, please call: (844) MY FACTOR / 693-2286Mon-Fri, 8:00 AM to 8:00 PM EST.
  • Pfizer Factor Savings Card
    Pfizer may be able to help you with your out-of-pocket expenses. Eligible patients can save up to $5,000 annually on co-pay, deductible, and co-insurance costs. Click to learn more.
  • Bioverativ
    Factor Access Program for patients using ALPROLIX who have no prescription coverage, are facing a gap in coverage, or have reached their maximum insurance coverage limit, may be eligible to receive product for free. Other restrictions may apply. 1-855-692-5776.

Support:

  • Hemophilia Association of New Jersey
    The mission of the Hemophilia Association of New Jersey is to improve the quality of life for persons with bleeding disorders by providing and maintaining access to highly qualified medical treaters and successfully proven medical regimens.

  • Hemophilia Association of New York
    The Association is an organization of and for families affected by bleeding disorders. They seek to provide information, education, advocacy, and assistance to persons with hemophilia.

  • National Organization for Rare Diseases NORD is a patient advocacy organization dedicated to individuals with rare diseases and the organizations that serve them.

  • New York City Hemophilia Chapter
    NYCHC seeks to foster a sense of community among people affected by bleeding disorders and to improve their quality of life. The organization hosts many events, shares news, and has many other programs.

  • New York State Bleeding Disorders Coalition                                                   
    The New York State Bleeding Disorders Coalition is a partnership of not-for-profit organizations dedicated to public advocacy on behalf of people affected by bleeding disorders in New York State.