The largest education and support event for the NC Bleeding Disorders Community is Back in Raleigh for 2023!
Community • Education • Support
Agenda First Time Attendee Information Children & Teen Track
The Consumer Medical Symposium is the Bleeding Disorders Foundation of North Carolina’s (BDFNC) annual education event for the entire bleeding disorders community. The Future is HERE; there are now novel therapies available or in development that change how a bleeding disorder is treated; factor products with longer half-lives are available, and the first gene therapy product has been approved for patients with hemophilia B. With so many new and exciting developments, we know that you want to learn more!
Sessions will be available for ALL bleeding disorders, including hemophilia, platelet disorders, ultra-rare factor deficiencies, and von Willebrand disease. There will be sessions for men with a bleeding disorder, women with a bleeding disorder, families with children diagnosed with a bleeding disorder, partners/spouses of someone with a bleeding disorder, advocacy for bleeding disorders, and in Spanish. We will be providing a children and teen track with a variety of activities. Additionally, some sessions will be available in a hybrid format, so if you cannot attend in person, you will still be able to tune in.
There will be time to get to know other people in the bleeding disorders community during different networking activities throughout the weekend. There will be prizes for attending some of the sessions as well as a variety of great raffle prizes at the conclusion of the event!
The Consumer Medical Symposium is FREE to attend, and as in past years, a hotel room will be provided at no cost on Saturday for those traveling from outside of the Raleigh area. Saturday lunch and dinner and Sunday breakfast and lunch, along with snacks, will also be provided.
Registration is closed. Please contact the BDFNC office for more information.
AGENDA
(subject to change)
Saturday, March 4
9:00 am – 10:00 am | Check-in with BDFNC | ||
9:30 am – 10:00 am | First Time Attendee Session | ||
10:00 am – 10:30 am | Welcome | ||
10:30 am – 12:00 pm | The Future is HERE * + Presentation: Gene Therapy for Hemophilia, Tyra Holland, RN, BSN, MBA Panel: Nigel Key, MD; Kristy Lee, MS, CGC; Andrew Scott | ||
12:00 pm – 1:15 pm | Lunch | ||
1:30 pm – 2:15 pm | Hemophilia
Basics of Innovative Therapies
Angela Lambing, MSN, ANP, GNP | Platelet Disorders & Ultra-rare Factor Deficiencies
Ultra Rares and Personal Advocacy
Katherine Cabrera, NHF | Von Willebrand Disease
Updates on the Management of von Willebrand Disease
Brendan Kleiboer, MD |
2:15 pm – 3:00 pm | Exhibit Break | ||
3:00 pm – 3:45 pm | Meet & Greet
Parents/Guardians & Adults with Bleeding Disorders | Latin Union*
Building Connections
Nichole Thomson, Takeda
| Partner & Spouse Support
Nick Henry |
4:00 pm – 5:00 pm | Learn About Bleeding Disorders Products & Services | ||
6:30 pm | Dinner
Life is Magic, Joshua Lozoff | ||
Sunday, March 5
8:00 am – 9:00 am | Breakfast | ||
9:00 am – 10:00 am | Rotating Breakout Sessions
Vonvendi and You HEMGENIX Pfizer and You Ixinity | ||
10:00 am – 11:00 am | Check Out of Rooms & Exhibit Break | ||
11:00 am – 11:45 am | Families – HOPE Program
Adversity, Strength, Resilience
Rachel Cooper-Leal, Pfizer | Men – Blood Brotherhood Program
Joint Protection Morgan Cook, Takeda
| Women – SOAR Program
Intimacy for Women with Bleeding Disorders
Sarah Watson |
12:00 pm – 1:00 pm | Understanding the Journey of Gene Therapy Clinical Trials * +
Lesley Milliner, Spark Therapeutics | ||
1:00 pm – 2:15 pm | Lunch | ||
2:15 pm – 3:00 pm | Families – HOPE Program
Parent/Guardian Connection
Gillian Schultz, BDFNC | Men – Blood Brotherhood Program
Using Fitness to Fight Back | Women – SOAR Program
Women’s Chat
Cheryl Clark |
3:00 pm – 4:00 pm | Advocacy & Insurance for Bleeding Disorders * +
Charlene Cowell, BDFNC; April Lindsey-Evans | ||
4:00 pm – 4:15 pm | Final Notes * +
BDFNC Staff | ||
* Sessions will be available in Spanish
+ Sessions will available on Zoom
| First Time Attendees
The First Time Attendee Session is for anyone who has never attended an Annual Meeting/Winter Conference/Consumer Medical Symposium in the past. You will have the option to select this on your registration, and we will reach out to you with more information. |
Children & Teen Programming
Childcare will be provided by NannysPlus.
Children’s activities include a program from the NC Museum of Natural Science and Game Truck.
The Teen Track will be facilitated by Beyond Recreation.
