Hemo Alliance Newsletters

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

Team Alliance Contact Information

We work for you! Please don’t hesitate to contact any of us with any questions or concerns:

Name Email Phone
Jeff Blake jeff@hemoalliance.org 317-657-5913
Jennifer Borrillo, MSW, LCSW, MBA borrillo@hemoalliance.org 504-376-5282
Heidi Lane, PT, DPT, PCS heidi@hemoalliance.org 435-659-1230
Jeff Amond amond@hemoalliance.org 608-206-3132
Jennifer Anders jennifer@hemoalliance.org 954-218-8509
Angela Blue, MBA angela@hemoalliance.org 651-308-3902
Karen Bowe-Hause karen@hemoalliance.org 717-571-0266
Zack Duffy zack@hemoalliance.org 503-804-2581
Michael B. Glomb MGlomb@ftlf.com 202-466-8960
Johanna Gray, MPA jgray@artemispolicygroup.com 703-304-8111
Kiet Huynh kiet@hemoalliance.org 917-362-1382
Elizabeth Karan elizabeth@karanlegalgroup.com 612-202-3240
Kollet Koulianos, MBA kollet@hemoalliance.org 309-397-8431
Roland P. Lamy, Jr. roland@hemoalliance.org 603-491-0853
Dr. George L. Oestreich, Pharm.D., MPA george@gloetal.com 573-230-7075
Theresa Parker theresa@hemoalliance.org 727-688-2568
Mark Plencner mark@hemoalliance.org 701-318-2910
Ellen Riker eriker@artemispolicygroup.com 202-257-6670