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Hemo Alliance Newsletters

Notes from the Community, October 2021

Notes from the Community

Hemophilia Alliance has joined the Blood Diseases and Disorders Education Program’s Blood Health Network. Our goal is to learn how the program and our new partner Network can best align with educational activities of others with mutual missions.

NHLBI Launches New Blood Diseases and Disorders Education Program
This national health education program aims to bring greater visibility to blood diseases, disorders, and blood safety. Learn more about this program and follow @BloodHealthEd on Twitter.
Link: https://www.nhlbi.nih.gov/education/blood

Join WFH
As HTC staff, you know firsthand what a difference access to proper care can make in the lives of people living with bleeding disorders. Yet the overwhelming majority of our global community go without basic access to diagnosis or treatment, resulting in premature disability and even death. This reality is all the more devastating because it is, as you well know, entirely preventable.

For nearly 60 years, the World Federation of Hemophilia has been working to equip and empower healthcare providers and patient advocates from our 147 national member organizations with the knowledge, tools and funding they need to:

  • identify and diagnose inherited bleeding disorders
  • provide adequate treatment and care
  • collect, interpret and disseminate data
  • advocate for safe and sustainable treatment and care

WFH membership is a way for you to support our mission to improve and sustain care – while enjoying some great benefits!

Individual members receive discounts on registration for the 2022 WFH World Congress in Montreal the first major hybrid event of the international bleeding disorders community, taking place from May 8 – 11, 2022, as well as a free online subscription to Haemophilia, the official journal of the WFH, EAHAD and HTRS.

Your center can also sign up for a group membership, which entitles up to 6 members to discounted registrations rates for the WFH World Congress.


“What I enjoy most about being a member of the WFH is access to networking with my peers around the world.”
– Christine Guelcher

Becoming a member sends a powerful signal that you believe that neither your gender, nor where you live, should impact your level of access to care. It’s also a great way to connect more deeply to the global bleeding disorders community.

Don’t miss this opportunity to join our growing family! Sign up for WFH membership today.

We look forward to welcoming you to the 2022 WFH World Congress in Montreal, and thank you for all you do to contribute to our vision of Treatment for All.

Sincerely,
Alain Baumann
CEO, World Federation of Hemophilia and WFH USA

Also in this Issue…

Notes from Joe
· You Never Know!

Legal Update
· Rebates Under the Uniform Grants Guidance: No Such Thing as a Free Lunch

Alliance Board Update
· Alliance Seeking Board Nominations

Alliance Update
· 2022 Spring Meeting Schedule
· New Member Maps

Team Alliance Contact Information

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

NameEmailPhone
Jeff Blakejeff@hemoalliance.org317-657-5913
Jennifer Borrillo, MSW, LCSW, MBAborrillo@hemoalliance.org504-376-5282
Jeff Amondamond@hemoalliance.org608-206-3132
Jennifer Andersjennifer@hemoalliance.org954-218-8509
Angela Blue, MBAangela@hemoalliance.org651-308-3902
Karen Bowe-Hausekaren@hemoalliance.org717-571-0266
Zack Duffyzack@hemoalliance.org503-804-2581
Michael B. GlombMGlomb@ftlf.com202-466-8960
Johanna Gray, MPAjgray@artemispolicygroup.com703-304-8111
Kiet Huynhkiet@hemoalliance.org917-362-1382
Elizabeth Karanelizabeth@karanlegalgroup.com612-202-3240
Kollet Koulianos, MBAkollet@hemoalliance.org309-397-8431
Roland P. Lamy, Jr.roland@hemoalliance.org603-491-0853
Dr. George L. Oestreich, Pharm.D., MPAgeorge@gloetal.com573-230-7075
Theresa Parkertheresa@hemoalliance.org727-688-2568
Mark Plencnermark@hemoalliance.org701-318-2910
Ellen Rikereriker@artemispolicygroup.com202-257-6670