Advocacy Update, May 2024

Advocacy and Legal Update

Hill Day Alumni’s Comic Book, “What is Factor 8?”, Featured on the News
by Elizabeth ‘Issie’ Karan, Legal Counsel

Earlier this year, the Cordes Family participated in the Hemophilia Alliance’s Hill Day with their Hemophilia Treatment Center, Center for Bleeding and Clotting Disorders at Children’s Minnesota, in Minneapolis and now have achieved a bit more fame while continuing to educate others about bleeding and clotting disorders.


[Click on image for larger version]

One day after school, Emmett Cordes created a comic book explaining how his condition and treatments work. With some help from his parents, Melissa and Caleb, the Cordes Family realized that the comic book could help other people – both kids like Emmett and Members of Congress – understand bleeding and clotting disorder better. With some help from the team at the Center for Bleeding and Clotting Disorders at Children’s Minnesota, the local CBS news affiliate filmed a segment with the entire Cordes Family to help get their message to the public.

I had the pleasure of joining the MN/IN team for the Hemophilia Alliance Hill Day. In addition to the Cordes Family, Justin Nelson-Deering, Director of Ambulatory Services at Children’s Minnesota, Amy Marquez, Operations Director at the Center for Bleeding and Clotting Disorders / MN Health Fairview, Dr. Kyle Davis, MD, Pediatric Hematologist-Oncologist with the Indiana Hemophilia & Thrombosis Center were part of our team. Below, you can see these dedicated advocates delighting Senators Amy Klobuchar and Tina Smith, and staff with Representative Angie Craig. The Hemophilia Alliance team thanks this team and everyone who took time to participate in Hill Day 2024!

Also in this Issue…

Jeff Weighs In

Marketing and Operations Team Update
· Spring Is In The Air
· Upcoming Webinar and Meeting Schedules

Member and Community Relations Update
· HANS Agreement with Emerging Therapy Solutions (ETS) for Gene Therapy Products

Washington Update
· HHS Final Rules Strengthen Protections for People with Bleeding and Clotting Disorders
· Biden Administration Releases Final Rule to Crackdown on Harmful “Junk Insurance” Products

Notes from the Community
· Hemophilia Alliance Foundation Announces Innovation Grants
· Mental Health Art Contest for Adolescents for Adolescents with Heavy Menstrual Bleeding – A Quality Improvement Initiative
· 4th Annual HTC Unite for Bleeding Disorders National Walk Challenge Update

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