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Hemo Alliance Newsletters

Notes from the Community, June 2024

Notes from the Community
  • VWD Connect Foundation Annual Conference in July: REGISTRATION STILL AVAILABLE!
  • VWD Connect Foundation (VCF) will be holding the 8th Annual National Type 3/Severe Von Willebrand Disease Conference in West Palm Beach, Florida on July 19-22, 2024. The conference provides a four-day patient education conference for Type 3 and severe VWD patients, along with a companion. The Foundation will provide all meals and hotel room for attendees, but patients and guests must provide their own travel to and from the West Palm Beach Marriott. Limited funds are available for travel assistance for patients in financial need.

    VCF is a non-profit organization established to serve the bleeding disorder community, focusing on severe Von Willebrand Disease. They provide education and connection for patients and families, and support research which will benefit the Von Willebrand Disease community.

    The 2024 conference’s faculty will provide educational sessions and small discussion groups. Faculty members include Dr. Christopher Walsh, Mt. Sinai Hospital, New York, NY, Dr. Tung Wynn, UF Health Shands Children’s Hospital HTC, Gainesville, FL; Dr. Robert Montgomery, Versiti Blood Research Institute, Milwaukee, WI, Dr. Veronica Flood, Medical College of Wisconsin, Milwaukee, WI and Dr. Jordan Shavit, University of Michigan. The faculty also includes experienced medical providers and health educators from a diverse group of disciplines such as physical therapy, genetic counseling, HTC social workers and nurses.

    Medical session topics will include diagnosis, symptoms, treatments, prophylaxis, genetics, infusion techniques, nosebleeds, anemia and joint challenges. Psychosocial sessions will address the issues of pain, depression, anxiety, disclosure, parenting, aging, transitioning and insurance.

    For more information about VWD Connect Foundation, the conference or other Foundation activities, please contact Jeanette Cesta, Executive Director, at JCesta@VWDConnect.org or 561-373-3889.


  • Navigating the Future, Together!
  • That is the theme of HFA’s Symposium March 27-30, 2025, in sunny San Diego, CA.



    HFA is looking for engaging and dynamic speakers to present 60-minute educational sessions on topics relevant to the bleeding disorders community. Audience is primarily the patient community but also includes other relevant stakeholders.

    Interested in sharing your knowledge, research, and expertise with a diverse population of interested and eager learners? Please send your topic idea, and a high-level session outline or additional questions to Janet Chupka – j.chupka@hemophiliafed.org

Also in this Issue…

Jeff Weighs In

Administration and Operations Team Update
· Don’t Miss Out! Navigating Patient Assistance and Copay Assistance Schemes Webinar
· Re-cap of the 1st Annual Hemophilia Alliance Physical Therapy Conference
· Upcoming Meeting Schedules

Advocacy and Legal Update
· New Research on 340B Program Spending Highlights Differences Among Covered Entities
· 340B Reporting Requirement Added to Medicare Telehealth Bill

Member and Community Relations Update
· MCR’s In the Community – MCR Team

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