Speakers: Brendan Hayes, Heather Hicks, Lena Volland, Ryan Sarshuri
Host: Fiona Robinson, Ph.D.
Description: Register to join us for a free webinar and learn about a new dynamic NBDF app-based program, developed through a cooperative agreement between the NBDF and the CDC designed for adults with hemophilia A, B, or von Willebrand disease who are on prophylaxis, plus more about the THRIVE program.
Don't miss this opportunity to gain valuable knowledge and contribute to the advancement of hemophilia care. Register now to secure your spot!
NBDF's Wednesday Webinars are a free education series open to providers and community members. Register to attend and learn about the latest in research, breakthrough developments, and more.
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About the Speakers:
About Brendan Hayes:
Brendan Hayes, MPG, CPH (She, Her, Hers) is the Senior Director of Education, Innovative Therapies at the National Bleeding Disorders Foundation, and a grateful HEDI champion. Prior to working with NBDF, she was the executive director of an NBDF-affiliated chapter. Her focus is on developing accurate, accessible, non-biased educational content on gene and innovative therapies for consumers. Her goal is to ensure consumers understand their treatment options, enabling them to participate in shared decision-making alongside their providers. Brendan is passionate about ensuring the rare disorders patient’s voice is woven throughout the drug development process and ensuring lived experience experts (LEEs) help drive educational content creation. Her expertise includes collaboration among gene therapy stakeholders, alternative financing strategies for innovative therapies, and policy and advocacy for rare diseases. Brendan serves on national committees, task forces, and working groups focused on gene and innovative therapies for rare disorders. She has a Master of Public Health (MPH) with a concentration in Public Health Leadership and is a Certified Public Health Professional (CPH).
About Heather Hicks:
Heather Hicks, MPH, (She, Her, Hers) is an enthusiastic and dedicated Manager of Education at the National Bleeding Disorders Foundation, where she has been making a significant impact on the lives of individuals with bleeding disorders. She skillfully manages the NYLI program for young adults, fostering the development of leadership and advocacy skills among the next generation. Additionally, she oversees the creation of a series of 3D videos for consumers about the clotting cascade and how different bleeding disorder treatments work in the body.
Heather holds a B.S. in Molecular and Microbiology and a Master of Public Health, which has provided her with a solid foundation in both the scientific and public health aspects of her work. With a rich 17-year career in the field of education, Heather leverages her extensive experience and expertise to create meaningful, engaging, and empowering learning experiences for those affected by bleeding disorders, ultimately helping to improve their quality of life and well-being.
About Lena Volland:
Lena Volland PT, PhD(c), (She, Her, Hers) is NBDF’s Director of Education and is involved in many educational programs in the Bleeding Disorders community. Originally from Germany, she started her career in the US as a physical therapist in orthopedics. She holds a Doctor of Physical Therapy degree from Mount St. Mary’s University and is a board-certified clinical specialist in orthopedic care. She has served as an educator with the University of St. Augustine and spent numerous years as a practicing clinician, including her role at a Hemophilia Treatment Center. Currently, she is working toward her Ph.D. in Translational Health Sciences at George Washington University. Her research is grounded in implementation, dissemination, and complexity science with a focus on knowledge translation, learning health systems, and health service delivery.
About Ryan Sarshuri:
Ryan Sarshuri, (She/They) is an Education Specialist at the National Bleeding Disorders Foundation, whose background comes from biochemistry research and reproductive healthcare. Ryan received a Bachelor of Science in Biochemistry and Molecular Biology from the University of Tennessee in 2020. Since then, Ryan has used their background at NBDF to educate, advocate, and inform in the specialist role by helping to lead the National Youth Leadership Institute (NYLI) program, plan sessions for the National Bleeding Disorders Conference, assist with the creation of the Clotting Cascade 3D Video Series, and assist in the development of the newly relaunched Own Your Path program. Because of Ryan’s role with the NYLI program, she loves finding new ways to engage teens/young people within the bleeding disorders community. Ryan is married and has two dogs, Lily (a big lab/hound mix) and Nacho (a chihuahua), both of whom like to sleep while she works. Ryan is very excited to be able to work for NBDF and the bleeding disorders community.
About NBDF's Wednesday Webinars with NBDF:
The National Bleeding Disorders Foundation (NBDF) Wednesday Webinars include a series of free educational one-hour webinars (up to 40-minute live Zoom presentation, followed by a 20-minute moderated Q&A) aims to bring knowledge about the latest research, breakthrough developments, and more to the bleeding and blood disorders community. Each webinar is held at 2 PM EDT. www.bleeding.org/events
Audience:
The audience consists of healthcare professionals and Lived Experience Experts which includes patients, families, and caregivers from around the world.
Topics:
Topics range from research into new therapies and diagnostics, to live experiences of people with bleeding and blood disorders, and the latest advocacy and community organization news.
Previous Recordings:
All Wednesday Webinars are recorded and made available to the community within seven days and immediately placed on the NBDF YouTube channel. (Subscribe Today)