Alliance Update, May 2024

Marketing and Operations Team Update
  • Spring Is In The Air
  • by Marketing & Operations Team

    Last month, our annual Spring Members Meeting and Hill Day in Washington D.C. brought together members from across the nation for a series of productive discussions, informative presentations, and successful advocacy efforts. The event was marked by beautiful weather, engaging speakers, and memorable moments, culminating in a heartfelt retirement celebration for Joe Pugliese.



    According to our post-event survey, 95% of attendees found the speakers to be highly informative and engaging, while 92% felt that the topics covered were relevant and valuable to their work. The networking opportunities were also highly rated, with 88% of respondents stating that they made meaningful connections during the event. One of our more important questions on the survey was “Do you prefer to have a member meeting combined with Hill Day or separate?” 66% of you chose to keep the two together.

    Hill Day was a standout success. Our members took to Capitol Hill to meet with lawmakers and advocate for the bleeding disorders community. The preparation and dedication of our members and staff paid off, as they effectively communicated our positions and built valuable relationships with key decision-makers.

    The event concluded on a celebratory note with a retirement celebration honoring Joe Pugliese. Joe’s contributions to our organization over the years have been immense, and the celebration was a fitting tribute to his dedication and hard work.



    As we reflect on the success of this year’s Spring Members Meeting and Hill Day, we are inspired by the energy and commitment of our members and the Hemophilia Alliance Team. The informative sessions, and productive Hill Day meetings have left us motivated and well-prepared for the challenges and opportunities ahead. We work for you!


  • Upcoming Webinar & Meetings
  • MEETING DATE
    Bayer Webinar [REGISTER NOW] June 5, 2024 @ 1:00pm EST
    Nurses CE Conference [ONLY VIRTUAL OPTION IS AVAILABLE] June 10 – 12, 2024
    Fall Members Meeting [REGISTER NOW] October 9 – 11, 2024
    Physicians and Business Administrators Meeting [REGISTER NOW] November 14 – 17, 2024

Also in this Issue…

Jeff Weighs In

Advocacy and Legal Update
· Hill Day Alumni’s Comic Book, “What is Factor 8?”, Featured on the News

Member and Community Relations Update
· HANS Agreement with Emerging Therapy Solutions (ETS) for Gene Therapy Products

Washington Update
· HHS Final Rules Strengthen Protections for People with Bleeding and Clotting Disorders
· Biden Administration Releases Final Rule to Crackdown on Harmful “Junk Insurance” Products

Notes from the Community
· Hemophilia Alliance Foundation Announces Innovation Grants
· Mental Health Art Contest for Adolescents for Adolescents with Heavy Menstrual Bleeding – A Quality Improvement Initiative
· 4th Annual HTC Unite for Bleeding Disorders National Walk Challenge Update

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