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Hemo Alliance Newsletters

Alliance Update, August 2020

Alliance Update

Alliance, NHF and HFA Launch Harmony in Hemophilia Campaign
By Karen Bowe

I am happy to announce the launch of our new campaign, Harmony in Hemophilia, aimed at enhancing relationships between our member HTCs, NHF Chapters and HFA Member Organizations. The goal driving our efforts is to facilitate increased awareness of all organizations and positively affect collaboration between the groups.  The Hemophilia Alliance recognizes the importance of partnership during these difficult times and in response, the three organizations are launching a series of joint webinars to address needs within the community as well as increase awareness of programs and services available to benefit members of the bleeding disorders community.  

We’ll begin with an initial webinar to introduce all of the organizations, which will include a short survey to understand current challenges affecting relationships between HTCs and NHF/HFA members. Future topics will be based on the results of the survey, however we will follow the initial webinar with a 340B 101 presentation for the bleeding disorders community, to highlight the history of 340B, how HTCs participate and why, and the advantages to HTCs and the community. 
 
In response to the launch of our campaign, NHF and HFA have included the following comments:

“Hemophilia Federation of America is excited to join with Hemophilia Alliance, National Hemophilia Federation and Hemophilia Treatment Centers across the country to collaborate on initiatives to strengthen the bleeding disorders community.” 

“Hearing from the community is extremely important,” said Dr. Len Valentino, President and CEO at the National Hemophilia Foundation. “This is truly what our Blue Sky Initiative is all about – listening to the community to know what their needs are to serve them the best way we possibly can. The launch of this new campaign aligns perfectly with what we are striving to establish – one community, and one voice.” 

I look forward to continued communication on the progress of Harmony in Hemophilia!   Please contact me with any questions.

Also in this Issue…

Notes from Joe
· Not Quite at the Finish Line Yet

Legal Update
· Protecting HTC Data Requires Reading the Fine Print

Washington Update

Payer Update
· Welcome Kimberly Lackman, the Newest Alliance Employee!
· Payer Relations Update

Notes from the Community
· Announcing Year 1 of Hemophilia Alliance Foundation Large Grant Award Winners

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