NHF’s 71st Bleeding Disorders Conference will be held October 3 - October 5, 2019 in Anaheim, California. Join us for three days full of educational sessions, networking opportunities and access to our Exhibit Hall. Registration include entrance to our Opening Session, Awards Luncheon, and our exciting Final Night event. Kids Program is available for children under 12 years old.

You can expect three full days of innovative educational sessions for the entire bleeding disorders community: affected individuals and family members, healthcare providers, chapter volunteers and staff—all designed to empower and support the community. The childcare program will keep kids engaged in fun educational activities so you can enjoy the three-day conference without worry.

You can look forward to:

• A three-hour preconference on von Willebrand disease
• A full track for rare factor deficiencies
• Sessions for partners and spouses of affected individuals
• A “mini-track” on basics of bleeding disorders Sessions to improve your infusion technique
• A three-day track for teens and young adults
• Proven fundraising and management techniques for chapter staff
• Full tracks for physicians, nurses, social workers, physical therapists, and pharmacists

Register here: 
NHF's 71st Bleeding Disorders Conference

Learn the benefits of self-care in a fresh, creative way.

Our commitment to helping patients extends beyond treatments so we are inviting you to an engaging art therapy presentation, dinner, and a piece of personal therapeutic art that’s your to keep.

CORE MANAGER: Brenda Adamson-Northeast
EVENT DETAILS: ELOCTATE and Art Therapy
LOCATION: TIMOTHY’S RIVERFRONT GRILL, WILMINGTON, DE 19801
RSVP: There is no cost to attend but you must contact to save your spot GERALD REED (302)312-4857 or geraldreed0330@gmail.com

Presented by: BVHF & SANOFI GENZYME

Hemophilia is a type of bleeding disorder that causes the blood to take a long time to clot. This can cause abnormal bleeding, or bleeding that won't stop. People with hemophilia have too little—or even none—of a protein in the blood called clotting factor. Hemophilia most often affects males and, in most cases, is inherited (passed down through families).

Originally, hemophilia was thought to be a single disease. In the 1950s, health care providers discovered that there are actually two forms of the disease: hemophilia A and hemophilia B. Because of this, each disease is treated with its own specific factor replacement medication.

HEMOPHILIA A & B: The basics

WHAT IS HEMOPHILIA A OR FACTOR VIII DEFICIENCY?
Hemophilia A is the most common form of hemophilia, occurring in about 1 in every 10,000 males. People with hemophilia A, also called "classic hemophilia," have a deficiency in clotting factor VIII, meaning that clotting factor VIII is either missing or is present at a low level.

Hemophilia is classified as mild, moderate, or severe, depending on the level of clotting factor in the blood. While more severe hemophilia is usually diagnosed during infancy, a mild form may not be diagnosed until adulthood.

People without hemophilia normally have a range of factor VIII or IX that varies from 50% to 150%.

WHAT IS HEMOPHILIA B OR FACTOR IX DEFICIENCY?

People with hemophilia B have a deficiency in clotting factor IX. Hemophilia B is sometimes called Christmas disease after Stephen Christmas, the first patient described with this disease. It is the second most common form of hemophilia, occurring in about 1 in 20,000-50,000 people.

Diagnosis of Hemophilia

There are special blood tests used to diagnose hemophilia. Although there is not yet a cure for hemophilia, living easily with hemophilia is now possible with the advent of clotting factor concentrates that can be infused even at home.

Treatment

The treatment of hemophilia involves the intravenous injection of clotting factor for acute bleeding or for prevention of bleeding. For adults and children who bleed frequently, prophylaxis is strongly recommended as it reduces or eliminates orthopedic problems, days missed from work and improves quality of life. For those who bleed less frequently, the replacement of clotting factor is given only for acute bleeds.

Treatment is aimed at replacing the deficient clotting factor. This involves intravenous injections of concentrates containing the needed factor. Many patients are on a home infusion program whereby they self-infuse the clotting factor concentrate when they bleed or administer it regularly to prevent bleeding. This ensures prompt treatment and gives them greater independence and more control over managing their disorder.

High adherence to prophylactic treatment not only reduces the number of spontaneous bleeding episodes in patients with hemophilia A, but it also improves their physical activity, according to a study.

The study, “Physical activity improved by adherence to prophylaxis in an Italian population of children, adolescents and adults with severe haemophilia A: the SHAPE Study,” was published in Blood Transfusion.

Hemophilia is a genetic blood disorder that affects the body’s ability to form blood clots to prevent excessive bleeding. In hemophilia A, this inability of the blood to clot is caused by the lack of a specific clotting protein, called factor VIII (FVIII).
 
Current treatments for hemophilia A are based on providing the missing FVIII to patients as a prophylaxis, or preventive measure, to avoid spontaneous bleeding episodes and other complications of the condition, such as arthropathy (joint disease).

“However, the prophylaxis regimen is not without problems. The main challenges are related to the cost of this therapy for national health systems and the burden of frequent intravenous infusions. [Nevertheless,] adherence to the prescribed prophylactic regimen is crucial to treatment efficacy,” the investigators wrote.

Learn more: 
Hemophilia Prophylaxis Adherence