This October 3-5, the place to be for members of the bleeding disorders community is Anaheim, California. That’s where the National Hemophilia Foundation (NHF) will host its annual Bleeding Disorders Conference (the organization’s 71st edition of the event).
Over the course of three days, attendees will have their choice of dozens of sessions within the conference’s many tracks. Along with tracks for adult men, teens and young adults, and women with bleeding disorders, other tracks to be aware of this year include ones dedicated to von Willebrand disease, parents and caregivers, spouses and partners, and rare bleeding disorders. The BDC en Español track features five sessions for Spanish speakers throughout the three days.
To get the most out of the conference, it’s best to do some advance planning. The program and schedule is online here. You can filter the schedule by track and by day and then print it out. Doing a little bit of “homework” ahead of time is well worth it. Decide which sessions you or your family are most interested in attending so you don’t miss out on information that’s important to you.
Along with the sessions you’ll naturally gravitate to because of your or your family’s individual circumstances (e.g., your age or type of bleeding disorder), there are some special sessions you’ll want to keep on your radar. These include:
Gene Therapy: Getting Up to Speed — October 3, 1-2 PM
There’s been rapid progress in gene therapy for hemophilia. This talk by Steven Pipe, MD, NHF’s Medical and Scientific Advisory Council chair, is a great opportunity to enhance your understanding of the technology and what it may hold for the future.
Gene Therapy: A Candid Conversation – October 4, 11 AM-12 PM
Gene therapy holds a lot of promise, but as with any new treatment, it also raises concerns. This balanced, patient-centric discussion will include multiple perspectives, including a healthcare provider, a participant in a gene therapy clinical trial, a person on a newer therapy and a person with hemophilia who is satisfied with standard factor replacement therapy.
Insurance Wizard – October 4, 4-5 PM
Insurance coverage problems among people with bleeding disorders are all too common. Three community members who have engaged in difficult and time-consuming battles with their health insurance providers will share what they learned from the process.
What Does Advocacy Mean to You? – October 5, 3-4 PM
Advocacy takes on many forms. Both experienced and new advocates will find inspiration in this roundtable session that includes the views and experiences of a parent of a child with a bleeding disorder, an HTC social worker, a young person with a bleeding disorder and a veteran lobbyist.
For all the details on the conference, visit the conference website. And once you’re in Anaheim, don’t forget to tag all your photos and other social media posts with the conference hashtag #NHF2019.