Member and Community Relations Update
MCR’s In the Community
The Member and Community Relations (MCR) Team is comprised of Angela Blue, Jeff Amond, Karen Bowe-Hause, Mark Plencner, Zack Duffy, Roland Lamy, George Oestreich and Kollet Koulianos. Jennifer Borrillo, Senior Vice President of Member and Community Relations, leads the team. As you know, a large part of our focus is assisting our member HTCs on a variety of issues. Some of you may not know that we are also out in the community almost every month attending events that support the great work being done in the bleeding and clotting disorder community. As we discussed in our June Newsletter article, the MCR Team will continue to highlight our community work in our Hemophilia Alliance Newsletter twice a year (June & December). Maybe you were there, and we missed you. Maybe you would have attended an event if you knew we were going to be there. Our goal is to get the word out so you know what meetings and events we will be attending. Also, let us know of any future events that you would like us to attend. As you know, we can’t attend everything, but we do our best to meet the needs of our HTCs and Community Partners.
In 2024, the MCR team attended over forty state and regional events and meetings in more than 30 states. The team also attended national conferences and advocacy events sponsored by sister organizations, including NBDF, HFA, Coalition for Hem B, THSNA, ATHN, VWD Connect, The Partners in Bleeding Disorders Education programs, and Self-Insurance Institute of America (SIIA). See below for the MCR team’s plans for 2025. We look forward to seeing Hemophilia Alliance members at many of these events.
Future Events MCRs are attending January – June 2025
| PARTNERS (Basic Partners Program for Clinical Staff) | January 13 – 15 Indianapolis, IN |
| Rocky Mountain Montana Chapter Education Weekend | January 17 – 19 Bozeman, MT |
| Pharmacist Meeting | January 22 – 24 San Diego, CA |
| Alaska Hemophilia Association Education Day | January 25 Anchorage, AK |
| PARTNERS (Advanced Topics II – Nursing Care Team) | January 26 – 28 Arizona |
| Virginia Hemophilia Foundation State Advocacy Day | January 27 Richmond, VA |
| NBDF Colorado Education Empowerment Weekend | February 7 – 9 Denver, CO |
| PNWBD State Advocacy Day | February 9 – 10 Salem, OR |
| PARTNERS (Basic Partners Program for Clinical Staff) | February 17 – 19 Indianapolis, IN |
| SIIA Healthcare Price Transparency Forum | February 18 – 19 Indianapolis, IN |
| 340 B Meeting – 21st Annual Winter Conference | Feb 24 – 26 San Diego, CA |
| Linda Gammage SW Meeting | February 26 – 28 Austin, TX |
| NBDF Washington Days | March 5 – 7 Washington D.C. |
| HTRS | Mar 13 – 15 Coronado, CA |
| Hemophilia Council of California Legislative Day | March16 – 17 Sacramento, CA |
| SIIA Spring Forum | March 17 – 19 Tampa, FL |
| HFA | Mar 27 – 30 San Diego, CA |
| PARTNERS (Presentation Skills Workshop) | March 30 – April 2 Indianapolis, IN |
| Western States Regional | April 4 – 6 |
| PARTNERS (Basic Partners Program for Clinical Staff) | April 7 – 9 Indianapolis, IN |
| Coalition for Hemophilia B | April 10 – 13 Orlando, FL |
| SpringFest | April 26 – 27 Troy, MI |
| Advanced Nurses CE Meeting | April 27 – 29 Orlando, FL |
| Mid Atlantic Regional Meeting | April 10 – 11 Alexandria, VA |
| Physical Therapist CE | May 14 – 16 Phoenix, AZ |
| PARTNERS (Basic Partners Program for Social Workers) | May 19 – 21 Indianapolis, IN |
| SIIA Cell & Gene Therapy Stakeholder Forum | May 27 – 28 Minneapolis, MN |
| 340B Grantee Spring Conference | May 29 – 30 Kansas City, MO |
| Wisconsin Bleeding Disorder Conference | June 6 – 8 Wisconsin Dells, WI |
| ISTH Congress | June 21 – 25 Washington, D.C. |
| TEXAS BLEEDING DISORDERS CONFERENCE | June 20 – 22 Dallas, TX |
| PARTNERS (Basic Program for Non-Clinical & Admin) | July 16 – 17 Indianapolis, IN |
Also In This Issue…
Jeff Weighs In
Administration and Operations Update
- 2024 Review – Celebrating Progress and Paving the Future
- 2025 Meetings
Advocacy and Legal Update
- 2024 – An Eventful Year for 340B and Insurance Reforms
- Agency and Regulatory Actions on Private Insurance Reform
- Hemophilia Alliance Hill Day Focused on 340B and Alternative Funding Programs
Notes From The Community
- Hemophilia Alliance Foundation Seeking New Board Members
- Unite Walk Wall of Walkers Campaign
- Empowering Change: Raising Awareness for Bleeding Disorders in Women, Girls, and People with the Potential to Menstruate