by Michael Fusaro, Director of Regulatory Compliance, The Alliance Pharmacy

The Alliance Pharmacy is working with The Hemophilia Alliance to collect Global Location Numbers (GLN) for each member organization. We are looking to ensure that there is no disruption to member’s ability to order medications after the Drug Supply Chain Security Act (DSCSA) deadline of November 27th, 2023.

If you don’t know if you have a GLN, you are not alone!

• First step: call Cardinal/McKessen/AmerisourceBergen (if you have a purchase account with them) and ask your sales rep if they have already assigned you a GLN. Most purchase accounts have been assigned GLNs and you can provide that GLN to other vendors.
• If you have not already been assigned a GLN:
One can be purchased for $30 through GS1us or…
Have TAP take care of it for you!!!!!

Email @Michael Fusaro and arrange for one to be assigned to you free of charge as a member of The Hemophilia Alliance.

Our goal is to ensure that all Alliance members have their own GLN prior to the November deadline.

Please complete this form and return it to DSCSA@TheAlliancePharmacy.org

by Karen Bowe-Hause, Director Member & Community Relations

On Thursday evening, August 17th, the National Bleeding Disorders Foundation (NBDF) Leadership and the Hemophilia Alliance held a special private reception during NBDFs Bleeding Disorders Conference in National Harbor, MD to honor the 2022 winners of the Hemophilia Treatment Center Challenge and their generous support of NBDF Chapters through the Unite for Bleeding Disorders Walk program. Light fare and cocktails were served to celebrate the meaningful collaborative work being done by HTCs and Chapters throughout the country.

The HTCs and NBDF Chapters listed below were honored guests for the evening:

1. Orthopedic Institute for Children Hemophilia Program supporting the Hemophilia Foundation of Southern California
2. Oregon Health & Science University Hemophilia Center supporting Pacific Northwest Bleeding Disorders
3. Indiana Hemophilia & Thrombosis Center supporting Hemophilia of Indiana
4. Cincinnati Children’s Hospital supporting Tri-State Bleeding Disorder Foundation
5. Rady Children’s Hospital supporting Hemophilia Association of San Diego County

The Hemophilia Alliance, co-presenting sponsor of the Unite for Bleeding Disorders Walk program, was honored for helping NBDF launch and promote the HTC Challenge program. The goal of the program is to increase HTC participation in NBDF Unite Walks and in the 3 years since the program’s inception, the HTCs have raised more than $80,000 for local Chapters. Keep in mind, the 2023 Walk season is just getting started!! HTCs, Keep Walking!!

by Jeff Amond, Director Member & Community Relations

The Linda Gammage Social Worker Conference Planning Committee and the Hemophilia Alliance are happy to announce that Diane Bartlett has been selected as the newest member of the Planning Committee. Diane’s 3-year term will start immediately. Please see Diane’s picture and bio listed below.

Diane Bartlett, LCSW is Program Manager and Social Worker at St. Luke’s Hemophilia Center in Boise, ID. Additionally, she is an Adjunct Professor teaching social work & psychology courses including Gender and Human Sexuality. She is considered a sought-after public speaker and has provided numerous presentations to large groups within St. Luke’s Health System, at community-based health conferences, and at local universities on mental health, medical social work, clinical ethics, and women’s wellness. Originally from the San Francisco area, she attended undergraduate at Texas Tech University and obtained her master’s in social work from University of Texas at Arlington. Over the past 30 years, she has worked as a licensed social worker in Texas, Ohio and Idaho.

In its on-line newsletter, the World Federation of Hemophilia (WFH) enthusiastically supported the Alliance Travel Fund, which provides WFH volunteers with the opportunity to attend global events as both presenters and attendees. Most recently, recipients, including a dentist, social worker, and HTC administrator, took part in the WFH Comprehensive Care Summit in Buenos Aires, Argentina. More information can be found at How the Hemophilia Alliance fosters international dialogue – WFH – World Federation of Hemophilia.

Several leaders of the Hemophilia community participated in a podcast on telemedicine and its impact on the care of patients with bleeding disorders, sharing both the benefits and challenges of caring for patients using this technology and the need for more research. The contributors on the podcast, which was hosted by Dr. Donna DiMichele and Patrick James Lynch, included Sativa Rangarajan, Michelle Witkop, Dr. Roshni Kulkarni, and Dr. Annette von Drygalski. The podcast can be heard in its entirety at this link: Global Hemophilia Report – Telemedicine for the Care of Hemophilia: What Do We Gain And What Do We Lose?