Hemophilia is a rare disease – with only about 20,000 Americans diagnosed and 400,000 people with the disease worldwide. It is a bleeding disorder, which “results when the blood’s ability to form a clot at the site of blood vessel injury is impaired.” There are two types of hemophilia – A and B. Hemophilia A is more common. According to Hemophilia.org – “Hemophilia A, also called factor VIII (FVIII) deficiency or classic hemophilia, is a genetic disorder caused by missing or defective factor VIII, a clotting protein.” Hemophilia B on the other hand, is “caused by missing or defective factor IX” which is also a clotting protein. Hemophilia has many symptoms, that are all related in that the patient’s blood does not clot properly causing them to bleed for longer. Some of the common symptoms include: nose bleeds, prolonged bleeding from minor cuts, blood in the urine or stool, and bruising easily, among others. There are a handful of different treatment options, the most popular being replacement therapy. From the Hemophilia Federation of America, “Hemophilia is treated by injecting the missing factor protein into the affected person’s vein. The injection makes the factor immediately available in the bloodstream and the body is able to activate it to continue the clotting cascade and stop the bleeding.”
Finding Help
The first place to check for assistance would be the NeedyMeds Hemophilia Resource Page. On this page we list all of the programs available for Hemophilia drugs along with links to more resources and programs, along with informational links. The Patient Assistance Program listings have contact information, along with application forms, for each program. We recommend calling each program to discuss qualifications before applying.
On this page we also list links to a number of organizations dedicated to Hemophilia education, research, and advocacy. These organizations are:
- National Hemophilia Foundation – dedicated to finding better treatments and ultimately a cure
- Hemophilia Federation of America – provides assistance to individuals and families in the bleeding disorders community
- New England Hemophilia Association – dedicated to education, support and advocacy
- Hemophilia Association of San Diego – provides social, financial and educational services for people with Hemophilia and other bleeding disorders
- Treatment Diaries – An innovative social networking site based on diagnosis
In addition to the Hemophilia resource page, we also recommend checking our Hemophilia Diagnosis-Based Assistance listings. This page includes a list of programs, both national and state-specific, dedicated to hemophilia. There are currently 47 programs listed providing a variety of services including assistive technology, medical equipment, travel expenses, co-payments and more. We also recommend checking the Diagnosis-Based listings for Bleeding/Clotting Disorders, Blood Disorders, and Hemophilia Inhibitors.
We also have listings of over 50 camps for patients with Hemophilia. These camps are located all across the country, some are summer-camps while others run year round. There are also over 40 scholarships available specifically for students with hemophilia.
Know of any programs we missed? Leave us a message in the comments or send us a message at blog@needymeds.org!
