“GLHF has been a great help supporting our family with these types of events where we can interact with both sides of our community, families and industry. It gives a strong sense of power through knowledge, education and support,” said one attendee at this year’s symposium. “It puts our minds and hearts at ease to know we are not alone.”
GLHF was honored to receive feedback like this from attendees at its inaugural Consumer Empowerment Medical Symposium this past November! This is just one of the many ways GLHF staff reaches the bleeding disorders community in both personal and imperative ways every year.
GLHF brought together some of the very best speakers for our consumers so that they could get the most out of this unique and special day. We gathered four of the best speakers in their respective fields to help educate, advocate and answer questions for those who truly need it.
Participants heard about the latest emerging treatments, therapies and research from recognized leaders and experts in science and medicine. Each of the speakers have have been advocating and working to improve the lives of consumers with bleeding disorders for many years. They have been on the cutting edge of their professions and we are so proud that they could participate in our event.
“One of GLHF’s primary functions is to provide public policy advocacy on behalf of, and in partnership with, the bleeding disorders community. We educate government officials and others about the impact that existing laws and pending legislation may have on someone living with bleeding disorder. This symposium, undoubtedly covered all of GLHF’s goals for its consumers,” said Kailee Frederick, Education and Programs Coordinator.
The one-day session covered four primary topics. Participants and topics included:
What is VWD and Why Do I Bleed? Presented by Robert R. (Bob) Montgomery, MD, Senior Investigator at the Blood Institute of Blood Center of Wisconsin, Professor of Pediatric Hematology at the Medical College of Wisconsin and GLHF Board Member. Milwaukee is the Center for the National Institutes of Health Study of VWD involving patients and families who may have been previously or are currently diagnosed with VWD. This session reviewed what causes this bleeding, diagnostics and treatments. One participant stated that “It was a pleasure to hear Dr. Montgomery present on VWD. I learn something new each time I hear a presentation on VWD. Dr. Montgomery was able to explain VWD in a patient friendly manner.” Another added that “Bob Montgomery was wonderful! Great to have an amazing presenter that speaks directly to VWD!”
The Current Treatment Landscape and Emerging Therapeutics. Presented by Lisa Baggio, MD, Medical Director at Rush University’s Hemophilia and Thrombophilia Center. Dr. Boggio has examined the current treatment landscape and has discovered where we are heading with emergent therapies. “I liked hearing from information from Dr. Boggio, as well as Tess Field (see below). They both talked about newer treatments and the benefits from them. They also talked about the cons, which is very important to know when choosing a treatment.” The group researched and discussed the pros and cons of current bleeding disorder treatment therapies including standard half-life factor replacement therapies and subcutaneous therapies.
Understanding Therapy Research and It’s Potential Application to Hemophilia. Tessa Field, Genetic Counselor. This session walked through a journal that started more than 5 years ago with the beginnings of gene therapy research. Participants learned about the basics of genetics and how they play a role in diseases such as hemophilia. With this knowledge, consumers discovered how gene therapy is meant to work and discussed the potential for the challenges of investigational gene therapy research today.
Insurance Trends and Barriers for the Bleeding Disorders Community. Kollette Koulianos, Senior Director of Payer Relations at the National Hemophilia Foundation. As treatments continue to evolve, the bleeding disorders community faces new challenges accessing services and care. One attendee stated that “Kollett’s Insurance Trends session provided great insight on the insurance world within the bleeding disorders community.” Consumers learned about what is currently happening federally and locally, and how they can take an active role, and what might occur as these therapies emerge. Another person added that “The Insurance Trends Session made me so much more aware of the cost of hemophilia and how it relates to insurance cost.”
Again, GLHF would like to take a moment to thank these wonderful speakers that we know have very busy schedules. They are truly the “best of the best”, and to have them at our Medical Symposium is an honor, so thank you.
Also, a thank you to all of our sponsors who without their support this day would not have been possible:
More quotes from this year’s event! Please join us next year!! Stay tuned at glhf.org!
“GLHF events have made me more aware of this community and have introduced me to new resources and products.”
“Before GLHF, I didn’t know about any resources in Wisconsin! GLHF is a wonderful, supportive community for those impacted by bleeding disorders.
“All of the programs were great. The timing was perfect as we are near open enrollment!”
“GLHF programs and services have supported my growth and understanding to make informed medical decisions for myself and my family. The support, education, and advocacy provided by GLHF has helped my family confidently share our story with others. I appreciate the opportunities to be provided with the most current topics related to the bleeding disorders community.
“We attended the consumer healthcare symposium! It was so well put together and crammed with so much good information! Gene therapy finally makes sense in a way I didn’t know I needed until today. And insurance topics were broken down into easy to understandable bits and pieces. Excellent use of a Saturday. Thanks GLHF – you once again provided excellent programming!”
Please note: Children’s Programming was provided for all families and caregivers during the symposium. Children made crafts, watched movies and played a number of games! A special thanks to Karin Koppen, Director of Camp and Community Outreach, for taking on this wonderful activity! And thank you to Kailee Frederick, Education and Programs Coordinator, for putting together this important and informative day!