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April 14, 2025 34 mins

Today on Beyond the Bleeds, Heather and John welcome Karin Koppen and Kailee Frederick from the Great Lakes Hemophilia Foundation to discuss their incredible work and programs serving the bleeding disorders community. Karin and Kailee share insights into the distinctive roles of local chapters in providing education, support, and advocacy while working closely with hemophilia treatment centers to ensure comprehensive patient care.

Karin Koppen joins us as the Director of Camp and Community Outreach at Great Lakes Hemophilia Foundation, where she has dedicated the past 18 years to supporting individuals with bleeding disorders. With her extensive experience in nonprofits and a personal understanding of life with a chronic disease, Karin is passionate about creating inclusive environments where people can thrive. Kailee Frederick, the Education and Programs Coordinator, has been with the foundation since 2016 and brings her camp leadership background to enhance programs like Camp Klotty Pine. Together, they foster impactful programs, enriching the lives of those in the bleeding disorders community.

“Creating supportive and inclusive environments for people to grow isat the heart of what we do.” ~Karin Koppen

Today on Beyond the Bleeds:

  • Great Lakes Hemophilia Foundation (GLHF) supports patients across Wisconsin with non-medical services such as education, advocacy, and financial assistance.
  • Local chapters like GLHF collaborate with hemophilia treatment centers (HTCs) to provide comprehensive care, balancing medical and non-medical needs.
  • The Wisconsin Bleeding Disorders Conference is an annual event bringing families together for education and connection.
  • Camp Klotty Pine offers a transformative summer camp experience for kids with bleeding disorders, focusing on empowerment and community.
  • Advocacy efforts at GLHF help ensure access to care and legislative awareness at both state and national levels.
  • GLHF provides scholarships and financial assistance programs to support educational and emergency financial needs.
  • Fundraising events like the Unite Walk and Best Bloody Series are crucial for sustaining programs and fostering community engagement.
  • Getting involved with GLHF’s programs and advocacy initiatives can lead to powerful community connections and personal growth.

Guest Contact Information:

Great Lakes Hemophilia Foundation:https://www.glhf.org/

Resources Mentioned:

Looking for practical tips, expert advice, and a sense of community while living with or supporting someone with a bleeding disorder?

Subscribe to Beyond the Bleeds, the podcast that explores life with hemophilia, von Willebrand disease, and other rare conditions. Hosted by Heather Hansen and John Mazzariello, we bring you real stories, expert insights, and heartfelt conversations designed to help you navigate life Beyond the Bleeds.

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