The National Hemophilia Foundation (NHF) is excited to welcome the bleeding disorders community to its 65th Annual Meeting October 3–5 in beautiful Anaheim, California. Our theme this year is “United in Progress,” and we are making progress on many fronts. In the past year, we’ve made strides in our nationwide genotyping initiative, My Life, Our Future, which was launched at our 2012 Annual Meeting in Orlando, Florida. Genotyping determines a person’s specific genetic mutation, and it has many benefits for patients and their families.
This year, we welcome actress Alex Borstein—best known as Ms. Swan from FOX’s MADtv and Lois Griffin from FOX’s Family Guy—to our conference, as we recognize her new role as NHF’s spokesperson for genetic testing. (Check out “Hemophilia Humor,” and “Connecting in California.”)
For My Life, Our Future, we set a first-year goal of reaching 10 pilot sites at hemophilia treatment centers (HTCs) throughout the US. These sites provide genotyping for free or at low cost to people with hemophilia. I am pleased to report that we have almost reached that goal.
As of September 2013, nine pilot sites have received Institutional Review Board (IRB) approval to participate in the My Life, Our Future genotyping project. The sites are: Bleeding and Clotting Disorders Institute in Peoria, Illinois; the Center for Comprehensive Care & Diagnosis of Inherited Blood Disorders in Orange, California; Emory/Children’s Healthcare of Atlanta Comprehensive Hemophilia Program in Atlanta; the Gulf States Hemophilia and Thrombophilia Center in Houston; the Hemophilia Center of Western Pennsylvania in Pittsburgh; the Indiana Hemophilia & Thrombosis Center in Indianapolis; the University of Michigan Hemophilia and Coagulation Disorders Program in Ann Arbor; the Pennsylvania State University and the Milton S. Hershey Medical Center in Hershey; and Puget Sound Blood Center in Seattle.
Additionally, two more pilot sites are under review by the IRB as we move toward a nationwide presence. Stay tuned to the website: MyLifeOurFuture.org for updates.
This issue also marks the launch of HemAware’s free new iPad app. Head to Apple’s App Store to download your digital copy of the magazine, and look for special content exclusive to the app. And as always, you can find the latest bleeding disorders news right here online at hemaware.org.
Together we are making progress that matters.
Val D. Bias is CEO of the National Hemophilia Foundation.