Alliance Update, August 2022

Alliance Update

Recognizing 2021 HTC Wall of Walkers Winners!
by Karen Bowe

2022 Unite Walk ChallengeThe Hemophilia Alliance hosted a recognition dinner for the 2021 NHF Unite Walk HTC Wall of Walkers winners at the NHF Bleeding Disorders Conference in Houston, TX on Thursday August 25, 2022. In attendance were representatives from 4 of the 5 winning HTCs: Cincinnati Children’s, Cincinnati, Ohio; Orthopaedic Institute for Children, Los Angeles, CA; University of Colorado, Denver, CO; and Fargo North Dakota Hemophilia and Thrombosis Treatment Center, Fargo, ND; along with representatives from the National Hemophilia Foundation. The Alliance wishes to thank these HTCs and all HTCs that participated in the 2021 Unite Walk.

We are again supporting NHF in the 2022 Unite Walk with the 2nd annual HTC Wall of Walkers campaign and are encouraging member HTCs to join with your local Chapters to form a team to support your local community. This year the walks will be 100% in person and so far are trending ahead of last year in both participants and team captains. As a reminder, as a member HTC of the Hemophilia Alliance, all HTC teams that raise $1,000+ for their local Walk program will be recognized by NHF & the Hemophilia Alliance as being a part of our Wall of Walkers. These teams will receive the following:

  • Recognition during Unite Rally Chapter and Community virtual training
  • Recognition from the Hemophilia Alliance in newsletter publications and webinars
  1. Top HTC Fundraising Teams: Unite Walk Chapters have been broken up into five respective market groups. The top HTC fundraising team in each group will receive a $1000 scholarship to send a staff person to attend the 2023 Bleeding Disorders Conference to be held in Washington, DC August 17-19, 2023. HTC sponsorships do not count toward Team Fundraising.
  2. Family team recruitment: We want to help you not only succeed but be the top HTC fundraiser in your market group. HTCs are given the opportunity to receive a quantity of promotional magnets to be given to families during their visits. Click on the link below for instructions from NHF on how to order magnets for your Center:

Join Us in Salt Lake City!

As noted above, the Fall Alliance Members Meeting will be in Salt Lake City, October 2-4, 2022. We are so excited to be back in person with everyone this Fall, and hope you’ll plan to join us for great information sessions, as well as the in-person networking and reconnecting that we have all been missing. To register to attend, click here. To book your hotel room, click here.


Fall Members Meeting
October 2nd, 2022 – October 4th, 2022

Salt Lake City, Utah

Sunday, October 2nd

  • 6:00 pm – Welcome Reception

Monday, October 3rd

  • Hemophilia Alliance Board Update
  • Alliance Update
  • Gene Therapy – Recap of summer meeting
  • Payer Update
  • HANS (Hemophilia Alliance Networking Services) Update
  • Medicaid Update
  • Panel Discussion of Physicians on Gene therapy
  • Washington Update
  • Gene Therapy Payer contracting discussion
  • HTC Best Practices
  • Panel Discussion – Gene Therapy Infusion centers
  • Networking Dinner

Tuesday, October 4th

  • National Patient Organizations presentations
  • New Therapies Update
  • Staffing & Operations within an HTC
  • Legal Update – (salary caps, capital improvements, carryover funds, patient services – dental, ortho referrals)
  • Manufacturing Partner presentations

Also in this Issue…

Notes from Heidi and Joe
· Serving Members Where They Are

Legal Update
· Proving the Absence of a Requirement: Use of Funds Derived from the 340B Program for Indigent Care

Payer Update
· The Payer Relations Communication Highway

Notes from the Community
· Recent Articles of Interest

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