Educational Resources:

  • 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.
    Click here for more information. 

  • Baxter
    Baxter assists healthcare professionals and their patients with treatment of complex medical conditions. Click for their information on hemophilia B.

  • 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.

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

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

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: 

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

  • 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.

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

  • 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. 

  • 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. 

Scholarships:

  • Baxter’s 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. Click for more information and to apply. (Please note: the application deadline for 2015 has passed. 2016 applications will be available in January.)

  • 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.

  • Hemophilia Scholarships
    This site includes an extensive list of scholarships available to those affected by hemophilia.

Insurance and Benefits Resources:

  • Grifols Savings Card
    The AlphaNine SD Savings Card Program helps cover co-pay and co-insurance costs. Click for full information and conditions.
  • 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.

Support:

  • Biogen
    For 35 years, Biogen has used cutting-edge science to discover, develop, and manufacture biological products. They also support a Community Relations team of parents, advocates, friends, nurses, social workers, and those with hemophilia B.

  • 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.

  • 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.

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

For Children:

  • Hemophilia Kids
    This site includes educational information, resources for help, a free illustrated e-book called “Adventures with Hemophilia,” and games.