Hemo Alliance Newsletters

Notes from the Community, February 2025

Notes From The Community

Foundation for Women and Girls with Blood Disorders

Applications for the Foundation’s Promoting XXcellence in Women’s Health: Optimal Management of Women and Girls with Blood Disorders are due on Friday, February 28, 2025. The $50,000, one year award is targeted to Junior Faculty or Fellows. The purpose of the award is to support a research project in hematology and/or obstetrics/gynecology in the area of blood disorders affecting women and girls. More information can be found here.

 

CHES Foundation Programs for HTC Patients

The Comprehensive Health Education Services (CHES) Foundation, Inc is dedicated to raising awareness, enhancing education, and fostering relationships. Programs provide an opportunity for families affected by inhibitors, ultra rare bleeding disorders and women who have, or provide care to those with a bleeding disorder an opportunity to be seen, heard, and supported by those who live this experience. For more information on the programs go to the CHES Website – CHES Foundation | Rare Bleeding Disorders.

Deadline for Completing BD SUMHAC Survey Approaching!

As you may know, the Bleeding Disorders Substance Use and Mental Health Access Coalition (BD SUMHAC), a 2023 recipient of the Hemophilia Alliance Foundation Innovation Grant, is working to improve access to inpatient/residential mental health and substance use disorder treatment facilities for individuals with bleeding disorders. BD SUMHAC is conducting a survey to assess the impact of their work over the past three years.

The deadline is Tuesday, February 25th, so if you have not yet completed the survey, please consider doing so today! The link to the survey is here: https://forms.gle/NeYHPdH8G1XjnQuY8. Results will be disseminated to the bleeding disorders community in the late spring.

Thank you for your consideration. If you have any questions, please contact Kate Bazinsky, Chair of BD SUMHAC at kbazinsky@bdsumhac.org.

Also In This Issue…
Jeff Weighs In
Advocacy and Legal Update
  • 340B Recertification is here!
  • Early Administration Actions in 2025
Member and Community Relations Update
  • Patient Assistance Resources
  • Hemophilia Alliance Genetic Testing Program
  • Decoding the Alphabet Soup of Healthcare Savings Accounts
Administration and Operations Update
  • Greetings from Admin and Ops!
  • 2025 & 2026 Meeting Schedules

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