Alliance Update, Spring 2022

Alliance Update

Alliance Seeking Board Nominations
by Eric Gray, CPA, Vice Chair, Hemophilia Alliance Board

The Hemophilia Alliance Board Nominating Committee is seeking applicants or suggested nominations to fill two vacancies on the board of directors, with the term beginning June 2022. For consideration by the nominating committee, applicants are to submit a letter of interest and resume or CV to by end of day Friday, April 29, 2022. We seek to broadly represent our membership and are encouraging applicants from all regions and disciplines to apply.

Applicants or suggested nominees must be employed by a Hemophilia Treatment Center in good standing with the Hemophilia Alliance, support the Hemophilia Alliance mission, vision and programs, and be willing to share their knowledge and expertise with the Hemophilia Alliance, participating in bi-monthly board meetings.

Terms are for a 3-year period, not to exceed 2 consecutive terms. 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. Due to the Covid-19 pandemic, the Hemophilia Alliance Board and Leadership will continually assess the appropriate setting for all meetings. During 2021, one meeting was held in person and also provided a virtual attendance option.

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.

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 and 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

Recap of the Linda Gammage Social Work Conference
by David Rushlow, Chair

The 24th annual Linda Gammage Social Work Conference was held in Nashville in late February. The conference was attended by 35 social workers who work in HTCs across the United States. For the first time we were able to offer a virtual option for those who were not able to join us in person.

We kicked off the meeting with a networking reception the night before the conference began. Everyone was so excited to be together, as we hadn’t been able to safely plan this meeting and be in-person since the start of the global COVID-19 pandemic. It was great to catch up with our colleagues, share ideas and network, and set the tone for the next two days.
Renee Jennings, MA, LCSW presented for a day and a half on “Transforming Trauma Through Somatic and Energy-Based Interventions: An Integrative Approach.” Renee is a therapist in private practice in Philadelphia, PA.

Her presentation focused on healing from psychological trauma using somatic and energy-based interventions. 2022 Linda Gammage Social Worker Conference - Group PhotoShe incorporated several group exercises to allow for experiential learning which enabled us to practice skills and experience the interventions first-hand. Renee’s amazing warmth and teaching style captured all of us from her first words spoken and had us enthralled for the entire meeting. We gained a new awareness of trauma interventions and learned effective energy-based techniques to use with our patients.

A huge thanks to Mark Guidarelli and Thomas Jones from CSL Behring who continue to support the social workers with a grant provided to the Alliance that allows us to hold the conference. We are also grateful to Joe Pugliese and Sean Singh from the Hemophilia Alliance who continue to support our conference from year to year. Kiet Huynh gets a shout out for his technology prowess and coordinating the virtual component. Jeff Amond is the Alliance Representative on the committee and made our work so easy! He is our go to for everything and a “jack of all trades.” His great sense of humor never gets old.

Thanks also to the hard work of the planning committee who meets throughout the year to plan this event: Colleen Joiner (my co-chair), Amy Wilson, Jennifer Borrillo, Eric Iglewski, and Kathaleen Schnur. We are already planning the 25th conference which will be held in April 2023, and hope to see many of the social workers there.

Also in this Issue…

Notes from Joe
· “If not us, who? If not now, when?” – John F. Kennedy

Legal Update
· 340B Program Developments

Washington Update
· Recap of the Alliance Hill Day

Payer Update
· HANS Signs 6th Payer Contract!

Notes from the Community
· Hemophilia Alliance Foundation Awards 2022 Project/Patient Assistance Grants!
· World Federation of Hemophilia: Global Reach. Local Impact.

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