Alliance Update, September 2020

Alliance Update

Alliance Seeking Board Nominations
By Heidi Lane, PT, DPT, PCS, Vice Chair, Hemophilia Alliance Board

The Hemophilia Alliance Board Nominating Committee is seeking applicants or suggested nominations to fill one vacancy on the board of directors, with the term beginning January 2021. Interested applicants must support the Hemophilia Alliance mission, vision and programs, be willing to share their knowledge and expertise with the Hemophilia Alliance and be able to participate in bi-monthly board meetings.

In a typical non-pandemic year, the Board meets six times per year, three via conference call and three in-person. Two of the in-person meetings occur at the Hemophilia Alliance membership meetings and one board retreat takes place in January. Again, due to the Covid-19 pandemic, for at least the first half of 2021, all meetings will take place virtually.

Our Mission
The Hemophilia Alliance works to ensure member Hemophilia Treatment Centers have the expertise, resources and public support to sustain their integrated clinical and pharmacy services for individuals with bleeding and clotting disorders.

Our Vision
Through the work of the Hemophilia Alliance, the clinical and pharmacy programs of the Hemophilia Treatment Centers are integrated, stable and sustainable within a changing healthcare environment. They are trusted and respected as the preferred way to provide people with hemophilia and other bleeding disorders access to the full range of care they need.

Applicants or suggested nominees must be employed by a Hemophilia Treatment Center in good standing with the Hemophilia Alliance. Terms are for a 3-year period not to exceed 2 consecutive terms. We seek to broadly represent our membership and are encouraging applicants from all regions and disciplines to apply.

Applicants should submit a letter of interest and resume or CV to Heidi Lane at by October 23, 2020 for consideration by the nominating committee.

For more information about the Hemophilia Alliance visit our website


What does it cost to be on the board?
There is no cost to be on the board.

When does the board meet?
Two in person meetings occur at the Hemophilia Alliance membership meetings, one board retreat takes place in January and three conference calls take place on the fourth Thursday of the month at 2pm EST.

What are the qualifications or degrees needed to be on the board?
You must be an employee of the HTC in good standing with the Hemophilia Alliance. No other qualifications or degrees are needed.

Do I need to hold a particular role in the HTC?

Does my program have to be a large program to be on the board?
Candidates from all types of centers from new startup centers to well established programs are encouraged to apply.

What are some of the things I should include in my letter of interest?

  • Your role with the factor distribution program.
  • Things that interest you in serving on the Hemophilia Alliance board and what you feel you will bring as a member of the board.
  • Include your experience with local, regional, national committees or boards related to hemophilia and related bleeding and clotting disorders.

If you have any additional questions please feel free to contact me at

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Join Our Growing Hemophilia Alliance Team!
By Sean Singh

As we grow and are navigating an ever-changing virtual world, the Alliance is looking to hire an IT person, who ideally also has some experience in the bleeding disorders community. The position will report to the Senior Vice President of Marketing and Operations. The job description and requirements can be found here. For questions about this position, please contact Sean Singh at or 727-388-7326.

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Meeting Schedule for 2021

  • Spring Members Meeting – Virtual
  • Hill Day – Virtual
  • Linda Gammage Social Worker Conference – Fall
  • New HTC Staff Meeting – Fall
  • Fall Members Meeting – September 2021

Also in this Issue…

Notes from Joe
· Continued Opportunities and Threats Facing HTCs

Legal Update
· 340B Program Developments: The Latest

Payer Update
· Know Your Patients and their Insurance Status

Notes from the Community
· CDC Awards Cooperative Agreements to Bleeding Disorders Organizations
· Hemophilia Alliance Foundation Poster at NHF’s BDC Shows Impact of Grants
· NHF Seeks Input for Blue Sky Strategic Plan