Notes from the Community, March 2023

Notes from the Community
  • Update on Partners Physician Academy
  • We are excited to announce that the Partners in Bleeding Disorders Education Program is launching its second annual training program in classical hematology for early career physicians.

    The Partners Physician Academy is a US-based, bleeding disorders-focused educational program delivered by hematology experts. The program’s goal is to provide fellows and early-career physicians with supplemental hemostasis-focused education while fostering connections that support their career development and future leadership as part of the HTC network.

    With the generous support of the Hemophilia Alliance and The Alliance Pharmacy, this 5-day training course will take place September 17-22, 2023, in Indianapolis, Indiana. It is open to both pediatric and adult medicine physicians.

    To see photos and testimonials from the 2022 Physician Academy, explore here:

    Applications are open, and must be received by April 7th, 2023, for consideration.

    Inquiries regarding the Partners Physician Academy should be emailed to:

  • Collaboration Updates with our National Organization Partners
  • by Karen Bowe-Hause, Director Member & Community Relations

    Coalition Hemophilia B 2023 Symposium
    March 16-18th Orlando Florida
    Renaissance Orlando at Sea World

    Hemophilia Alliance is a proud sponsor of live MASAC Meetings
    March 24th -25th 2023
    National Harbor, Maryland

    Hemophilia Federation of America – 2023 Annual Symposium
    For the 2nd year in a row, the Hemophilia Alliance and HTCs will be represented at HFAs Annual Symposium:

    April 13-16
    Renaissance Orlando at SeaWorld, Orlando, Florida

    Friday April 14: 3:00 – 4:00 pm

    Joe Pugliese, President and CEO of the Hemophilia Alliance will present an update on DDAVP NS availability.

    Title: DDAVP NS (desmopressin acetate nasal spray) Availability Updates
    Session Description: DDAVP has been a valuable treatment option for the bleeding disorders community. Commonly used to treat von Willebrand disease (VWD) type 1, and mild or moderate hemophilia A, the nasal spray version of desmopressin, (DDAVP) manufactured by Ferring Pharmaceuticals, issued a voluntary recall in the summer of 2020. The Hemophilia Alliance will be presenting the history of the recall and steps they have taken with STAQ Pharma, Inc. to ensure continued access to this important treatment option through DDAVP NS.

    Saturday April 15: 10:45 – 11:45 am
    We are honored to have Marilyn J. Manco-Johnson, MD, Professor of Pediatrics, from the Hemophilia and Thrombosis Center, University of Colorado, Aurora, CO representing the member HTCs of the Hemophilia Alliance. She will be presenting on the following topic:

    Title: Evolving treatment options for Mild Patients: Engaging your HTC as a vital resource
    Session Description: Join Dr. Marilyn Manco-Johnson as she shares a brief history of the U.S. HTC Network and its importance in advancing care and treatment options specifically for patients with mild bleeding disorders. Her perspective and expertise on treatment for mild disorders comes from decades of experience caring for bleeding disorders patients with a focus on innovating to improve the lives of her patients.

    Dr Manco-Johnson’s session will feature 45 minutes of didactic information and 15 minutes of Q & A. Shellye Horowitz, HFA’s Director of Education, will be the staff host for this session. Shellye has spearheaded HFA’s efforts to recognize and support those with a mild diagnosis or those seeking a mild diagnosis through innovative educational programming and partnerships with key allies, like the Hemophilia Alliance!

Also in this Issue…

Notes from Joe
· Dateline: Washington, DC
· Product Update

Washington Update
· Register for the Hemophilia Alliance Hill Day this June!

Alliance Board Update
· Alliance Seeking Board Nominations

Alliance Update
· The Alliance Upcoming Events Webpage – A New Look & Feel

Payer Update
· HANS PPO Agreement 42 signed, 65 To Go

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