Alliance Update, August 2021

Alliance Update
  • Harmony in Hemophilia – HTC Wall of Walkers Unite Walk Challenge Update
    by Karen Bowe

    Our initiative to enhance relationships between HTCs and Chapters and to increase HTC participation in NHFs Unite Walk program is working! So far, we have 17 HTC teams registered. Of walks scheduled in July and August, HTCs teams participated in 5 of the 6 total walks. And of the 20 walks scheduled in September, we currently have 10 HTC teams registered. As the walk season gets into full swing in September and October, we anticipate registrations will continue to increase.

    As a reminder, all HTC participating teams will be acknowledged on the HTC Wall of Walkers located on the Unite Day landing page on NHFs website. The HTC team name along with photos or a logo will be featured in a scrolling fashion and the site will be continuously updated throughout the season. In addition, the 5 highest fundraising teams will receive a $1000 travel scholarship to the 2022 NHF Bleeding Disorders Conference to be held in Houston, TX Aug 25th – 27th. The Hemophilia Alliance thanks everyone for your participation and efforts to benefit your local Chapter.

    Happy Walking!!


  • Update on New Member Meeting
    by Sean Singh

    Hi, all! I hope that you received my recent email with information about the upcoming Hemophilia Alliance New Member Meeting! Here are the details as we currently know them. If you haven’t yet, please complete this survey to share your feedback on the meeting.

    • When? November 7-9, 2021
    • Location? TBD
    • Who may attend? Up to two staff members per Alliance member center, who were hired after January 1st 2019. Attendees must commit to attend by September 1, 2021
    • What is the cost? It is a member benefit. The Hemophilia Alliance with support from manufacturing partners will underwrite airfare+, accommodations, food and ground transportation.*

    The meeting will be underwritten by pharmaceutical manufacturers. We are planning on limiting it to 4 manufacturers. Each manufacturer will present a 45-minute session as part of the meeting. The manufacturers will also have table displays in the lobby area outside the meeting room.

    +Airfare will be booked by the Hemophilia Alliance who will do its best to make your trip as easy as possible.
    *Ground transportation will be covered by a $100 prepaid debit card provided to the attendee when they arrive at the meeting.

    Meeting Schedule

    Sunday November 7th
    5:30 pm – Networking session and cocktail hour

    Monday November 8th
    7:30 am – Breakfast
    8:30 am – Meeting begins
    12:30 pm – Lunch
    5:30 pm – End of first day meetings
    6:30 pm – Group dinner

    Tuesday November 9th
    7:30 am – Breakfast
    8:30 am – Meeting begins
    12:00 pm – Lunch
    4:00 pm – End of meeting

    Please contact me at sean@hemoalliance.org with any questions.

Also in this Issue…

Notes from Joe
· Washington Update

Legal Update
· Uniform Grants Guidance Procurement Standards: More Than Just Finding a Good Bargain

Washington Update
· Drug Pricing Update

Payer Update
· Working with the Payer Team and Hemophilia Alliance Network Services (HANS) a 2021 Case Study