Notes From The Community

2024 VWD Connect Foundation Provider Education Workshop on Severe Von Willebrand Disease

VWD Connect Foundation (VCF) was formed to serve the bleeding disorder community, focusing on severe Von Willebrand Disease. We provide education and connection for patients and families, and support research which will benefit the Von Willebrand Disease community. In support of these patients accessing knowledgeable management and care from their medical providers, the Foundation will be hosting a Provider Education Workshop November 8-10, 2024, in West Palm Beach, FL.

The Foundation has identified a strong need for focused education for providers across multiple disciplines specific to Severe Von Willebrand Disease patients. The curriculum will be presented by Foundation Faculty and will be designed to increase provider knowledge on management, treatment options and disease state including laboratory & genetic testing.

Attendance is open to the following medical professionals who work with, or expect to be working with, severe VWD patients.

• Adult Hematologists
• Gastroenterologists
• Pediatric Hematologists
• Hematology Nurses
• Orthopedic Surgeons
• OB/Gyn
• Physical Therapists
• Genetic Counsellors
• Hematology Social Workers
• Family/Maternal Medicine

The weekend workshop will begin on Friday, November 8th with an opening reception at 5:00 PM and end at 3:00 PM after lunch on Sunday, November 10th. The Foundation will provide free of charge a hotel room for Friday and Saturday nights, and all meals and supplies for those attending.

Sessions will consist of full assembly general sessions and smaller group breakouts. The smaller group breakouts will focus on specific topics within disciplines and will allow for more interactive group discussion.

Sessions will include:

1. Disease state – genetics, symptoms, treatment options and management
2. Case study presentation – by both faculty and attendees for discussion
3. Research update and idea tank
4. A panel of 6 Foundation members will participate in a panel discussing living with severe Von Willebrand Disease (sVWD). These patients will represent various demographics (patient age/gender, parents of young children, spouses, etc.)

To register, please visit our website at:

WEBSITE – PROVIDER EDUCATION WORKSHOP

FOR MORE INFORMATION ABOUT THE EVENT, PLEASE CONTACT:

Jeanette Cesta, Executive Director – JCesta@VWDConnect.org or (561) 373 3889

Do You Have A Passion for Sharing Your Knowledge and Experience in Hemophilia Care and Management?

The Hemophilia Federation of America is excited to invite speakers from leading experts in the field of hemophilia to speak at our upcoming conference, HFA Symposium 2025 in beautiful San Diego, CA, March 27-30, 2025. This conference will bring together patients, caregivers, healthcare professionals, researchers, and industry leaders to share the latest advancements, best practices, and personal stories related to hemophilia.

We are seeking speakers who can address a variety of topics, including:

• New and emerging therapies for hemophilia
• Management of bleeding complications
• Optimizing long-term care for individuals with hemophilia
• The psychosocial impact of living with hemophilia
• Advocacy and access to care
• Aging with a bleeding disorder
• Women and bleeding disorders

Speaker Benefits:

• Opportunity to share your expertise with a dedicated audience
• Platform to contribute to the advancement of hemophilia care
• Travel and accommodation assistance may be available (if applicable)
• Recognition in conference materials

To Apply: Please submit an abstract of your proposed presentation (250 words) and a brief bio (100 words) by November 30, 2024, to j.chupka@hemophiliafed.org