Alliance Update, December 2022

Alliance Update
  • Save the Date for Alliance Meetings for 2023!
  • by Theresa Parker, Administrator

    Hemophilia Alliance has been working diligently to ensure a full schedule of meetings for the upcoming year. After the difficult years of 2020-2022, it is refreshing to get back to “business as normal” and continue the trend of in-person meetings. There is a lot of activity in the hemophilia community, and it’s been an interesting exercise to navigate around these events.

    We are excited to announce several new meetings in 2023 to bring together professionals in the blood disorder field to discuss important issues and advancements. These meetings will provide an important platform for attendees to network, learn from industry experts and share their own experiences. We hope to see you at one or more of these exciting events.

    Mark your calendars to SAVE THE DATE!

    Hemophilia Alliance Meeting Schedule for 2023

    January 26-28 Pharmacist CE Meeting San Diego, CA
    February 13-15 Spring Members Meeting Nashville, TN
    April 26-29 Social Worker CE Conference San Mateo, CA
    May 10-12 (tentative) New HTC Staff Meeting TBD
    June 12-13 Hill Day Washington, DC
    September 19-21 Fall Members Meeting TBD

    In addition to the above meetings, we are working on other meetings that you have requested. Stay tuned. More to come!

  • HTC Wall of Walkers 2022 Update
  • by Karen Bowe-Hause, Director Community Relations

    In collaboration with the National Hemophilia Foundation, the Hemophilia Alliance was proud to sponsor the 2nd annual Unite Walk Wall of Walkers campaign, designed with the intent to inspire further partnerships between our member Hemophilia Treatment Centers & their local Chapter affiliates. The Alliance would like to congratulate the 2022 Wall of Walkers Top 5 Hemophilia Treatment Center teams who have earned top fundraising status for the Unite for Bleeding Disorders Walk in their assigned market! Collectively, the 36 member HTC teams organized raised more than $35,000 to support their local Chapters through this initiative in 2022. Each of the 5 top HTC teams will receive a $1,000 scholarship that is intended to be used to send a staff member to the 2023 Bleeding Disorders Conference that will be held August 17th-20th in Washington, DC.

    The 5 winning teams are:

  • Ortho Walkers (Team Captain – Doris Quon) – Orthopaedic Institute for Children Hemophilia Program, in support of the Hemophilia Foundation of Southern California
  • HTC – Smells like HEME Spirit (Team Captain – Zack Duffy) – Oregon Health and Science University Hemophilia Center, in support of the Pacific Northwest Bleeding Disorder Foundation
  • Indiana Hemophilia and Thrombosis Center (Team Captain – Tyler Hufnagle) – Indiana Hemophilia and Thrombosis Center, in support of Hemophilia of Indiana
  • Team Hemophilia Treatment Center (Team Captain – Lisa Littner) – Cincinnati Children’s Hospital, in support of Tri-State Bleeding Disorder Foundation
  • Rady Children’s HTC (Team Captain – Courtney Thornburg) – Rady Children’s Hospital, in support of Hemophilia Association of San Diego County
  • The Hemophilia Alliance would like to thank ALL of our member HTC teams for supporting the community, the local Chapters and NHF in one of the largest fundraising events for NHF and Chapters across the country!!

    2022 UNITE WALK (Los Angeles, CA) Ortho Walkers Doris Quon
    2022 UNITE WALK (Portland, OR) HTC – Smells Like HEME Spirit Zack Duffy
    2022 UNITE WALK (Indianapolis, IN) Indiana Hemophilia & Thrombosis Ctr Tyler Hufnagle
    2022 UNITE WALK (Cincinnati, OH) Team Hemophilia Treatment Center Lisa Littner
    2022 UNITE WALK (San Diego, CA) Rady Children’s HTC Courtney Thornburg
    2022 UNITE WALK (Denver, CO) Chill Factor Kimberly Hurdstrom
    2022 UNITE WALK (Anchorage, AK) HTC 2022 Kyme Groller
    2022 UNITE WALK (St. Louis) The Coagulators – Wash U/SLCH Makenzie Sledd
    2022 UNITE WALK (Boston, MA) CT Children’s Julia Gardner
    2022 UNITE WALK (Illinois) Rush HTC Mad Infusers Mindy Simpson
    2022 UNITE WALK (Fargo, ND) Sanford’s Stop the Bleed Team Kim Rasmussen
    2022 UNITE WALK (Cleveland/Akron, OH) Akron Children’s Hospital HTC Irene Boehlefeld
    2022 UNITE WALK (Houston, TX) Texas Children’s Hospital HTC Trinh Nguyen
    2022 UNITE WALK (Cleveland/Akron, OH) UH Rainbow HTC Susan Hunter
    2022 UNITE WALK (Los Angeles, CA) CIBD: Time to Get Moving Grace Hernandez
    2022 UNITE WALK (Grand Rapids, MI) Helen DeVos Children’s Coag Team Deanna Mitchell
    2022 UNITE WALK (Pittsburgh, PA) Bubble Brigade Kathaleen Schnur
    2022 UNITE WALK (Hiawatha, IA) Iowa Treaters Karla Watkinson
    2022 UNITE WALK (Milwaukee, WI) CCBD Tiffini Mueller
    2022 UNITE WALK (Honolulu, HI) Blood Sweat and Love Johnelle Kane
    2022 UNITE WALK (Dallas, TX) Children’s Health Hemophilia Allstars Michele Salinas
    2022 UNITE WALK (Westerville, OH) NCH HEME TEAM Linda Casto
    2022 UNITE WALK (Montana/Wyoming) Chill Factor Angela Blue
    2022 UNITE WALK (Westerville, OH) Team OSU Abigail Rabatin
    2022 UNITE WALK (Pittsburgh, PA) HCWP/CHP Frederico Xavier
    2022 UNITE WALK (Las Vegas, NV) HTCNV/SCCNV Lawrence Avancena
    2022 UNITE WALK (Anchorage, AK) ABDC Adminions Dave Groller
    2022 UNITE WALK (Kansas/Missouri) KC HTC Debbie Nelson
    2022 UNITE WALK (Reno, NV) HTC Reno Sonya Davis
    2022 UNITE WALK (Houston, TX) Gulf States Hemophilia & Thrombophilia Sabrina Farina
    2022 UNITE WALK (Omaha, NE) Children’s Hospital & Medical Center Amanda Whitman
    2022 UNITE WALK (Charleston, WV) CAMC HTC Donna Arden
    2022 UNITE WALK (Williamsburg, VA) CHKD HTC Megan Songer
    2022 UNITE WALK (Boston, MA) BOSTON STRONG! Clifford Haas
    2022 UNITE WALK (Houston, TX) Team Frank Lindsay ONeill-Dewing
    2022 UNITE WALK (Milwaukee, WI) Hemophilia Outreach Center Erica Brock

  • Flashback to the Fall HTC Member Meeting in October
  • by Jennifer Anders, Manager of Data and Analytics

    Chart 1We had a wonderful turnout of 105 members in beautiful Salt Lake City, Utah. The Alliance values each of our members and their experiences at all our meetings and we were fortunate to receive feedback from 52 of our attendees.

    We welcomed both new and old faces with 22% of the attendees experiencing their first Hemophilia Alliance meeting.

    All the speakers did a wonderful job of presenting on various topics, such as the Faces of Data and the Mental Health talk, but there were a few talks that the respondents found the most useful (top 5 listed below). Gene Therapy was a hot topic at this meeting, with about 5 separate talks. We received several comments on working to consolidate the Gene Therapy topic in the future.

    Chart 2It was great hearing that our members enjoy these meeting and getting to network, but we also appreciate the constructive feedback we receive that helps us serve all of you better in the future. While COVID did impact attendees both prior to and after the meeting, we will continue to take the meeting spaces and any necessary precautions into account. Additionally, always feel free when registering for these meeting to provide us with any special dietary needs or restrictions. Thank you to those who took the time to respond to our survey and as we look forward to another great year in 2023, always feel free to reach out with any suggestions or feedback and we will do our best to act.

Also in this Issue…

Notes from Joe
· Looking Back on 2022

Alliance Board Update
· Welcome New Alliance Board Members!

Legal Update
· Alliance Legal Activities Recap

Washington Update
· 2022 Wrap Up

Payer Update
· Recap of Payer Activity

Notes from the Community
· Hemophilia Alliance Foundation: Announcing Project and Patient Assistance Grants!

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