Ultra-Rare Bleeding Disorders & von Willebrand Disease Education Day – Chapel Hill, NC

Ultra-Rare Bleeding Disorders & von Willebrand Disease Education Day – Chapel Hill, NC June 3, 2023

UNC Friday Center

100 Friday Center Drive
Chapel Hill, NC 27599

Hybrid Event
Registration Deadline: 05/28/2023 11:59 PM

The Bleeding Disorders Foundation of North Carolina (BDFNC) is excited to host the second Annual Ultra-Rare Bleeding Disorders & von Willebrand Disease Education Day! If you or a loved one are affected by a platelet disorder, ultra-rare factor deficiency (factor 1, 2, 5, 7, 10, 11, 12, 13 deficiency), or von Willebrand disease (VWD), we hope that you will join us at the UNC Friday Center in Chapel Hill for a day of connection and education.

If you aren’t able to make it in person, some sessions will be available virtually on Zoom, so please sign up to attend as a virtual participant!

We are excited to have Dr. Paulette Bryant and Connie Montgomery joining us this year. Other sessions are still being finalized, so continue to check back for updates.


Agenda (all times and sessions are subject to change)

9:00 am – 9:30 am: Registration

9:30 am – 10:30 am: How Much Do You Know About Bleeding Disorders?
Learn about ultra-rare bleeding disorders and VWD through an interactive game.

11:00 am – 12:00 pm:
VWD Guidelines: What
Mean for You
     Learn about the VWD Guidelines that were released in 2021.
Current Treatments for Ultra-Rare Bleeding Disorders
   Provides an overview of ultra-rare bleeding disorders and platelet disorders, including genetics and treatments.

12:00 pm – 1:00 pm: Lunch

1:00 pm – 2:00 pm: Rare & Incredibly Resilient
     Learn about the history of bleeding disorders and where we are now. There will be a group activity identifying five areas of care.

2:00 pm – 3:00 pm:
Pain Explained
      Improve your understanding of how pain affects people with bleeding disorders and approaches to manage pain.
What Can BDFNC Do For YOU?

Discuss your needs so that BDFNC can continue to provide you with the best support possible.

3:30 pm – 4:00 pm: Speaking Up for Yourself: Self-Advocacy
     Learn tips, tricks, and tools to help you share important details about your bleeding disorder with those who need to know.

4:00 pm – 5:00 pm: Group Activity

We hope you will join us! Registration is required. Please register by May 28.

*Please note – childcare will not be provided at this event. However, you are welcome to bring them along to the sessions.

Registration is closed. Please contact the BDFNC office to see if space is available.

Thank you to our sponsors:

Gold Sponsor

Silver Sponsor

Kedrion Biopharma - GBS/CIDP Foundation International