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Inhibitor Education Summits Welcome Patients and Their Families

There will be four educational conferences this year

By Beth Marshall | 04.13.2012
Originally Published April 2012

Registration is now open for the National Hemophilia Foundation’s (NHF’s) 2012 Inhibitor Education Summits, educational conferences for people who have hemophilia with inhibitors and their families. There will be four educational conferences this year. Two of the summits are for Spanish-speaking families, in Los Angeles on May 11–13, and in Miami on June 22–24. The other two summits in English will take place in Miami on July 19–22, and in San Diego on August 2–5. The Inhibitor Education Summits are made possible by an educational grant from Novo Nordisk. They are open to first-time and repeat attendees.

In some people with hemophilia, the immune system reacts to the recombinant clotting factor by ­perceiving it as foreign and creating antibodies called inhibitors. Inhibitors combat the clotting factor, rendering it ineffective in treating bleeds. Between 10% and 30% of ­people with hemophilia A and 1%–4% of people with hemophilia B develop inhibitors.

Having a complication from an already-rare disorder can make life difficult for people with hemophilia with inhibitors and their families. Their experiences of treatments and bleeds are so different from people for whom recombinant factor works as it should. The sessions at the summits are designed to meet the health and emotional needs of this population, and were created by a committee of doctors, nurses, physical therapists and social workers who have experience treating people who have hemophilia with inhibitors.

Each English inhibitor summit is divided into four tracks: “Hemophilia With Inhibitors 101,” for people who are newly diagnosed; “Hemophilia 201,” an intermediate track; “Young Men With Inhibitors (16–19),” for teenagers with inhibitors and their siblings; and “Adult Men With Inhibitors (19 and Beyond),” for adult men. Both the English and Spanish summits will offer sessions on new drugs in development, tips for parents, sports and exercise, and immune tolerance therapy. Childcare is available at all summits for children up to age 12.

Travel and accommodation assis­tance is available to all eligible attendees. Get more information about registering for the summits, see a list of frequently asked questions, and more.