HFA Announces Archive Project with Smithsonian Institution
By Kimberly Haugstad

Hemophilia Federation of America (HFA) recently announced they have made an initial donation of historical artifacts related to the history of the bleeding disorders community to the Smithsonian Institute's National Museum of American History in Washington, D.C. The donation materials, which include historical artifacts, personal journals, articles, newsletters, other documents as well as photographs, oral histories, including those of HTC physicians and staff, make up the first step in preserving the history of the bleeding disorders community for future generations.

The Hemophilia Alliance has made a meaningful financial contribution to support the first phase of this effort. The Alliance was recognized for this generous support at HFA’s annual Symposium in San Diego on April 5, 2019. Further personal or organizational financial contributions to the bleeding disorders history project are welcome as additional donations/phases of this project continue. Contributions are accepted at https://give.onecause.com/hfa.

We want you to be a member of the Hemophilia Alliance Team

We are looking for a Director of Community Relations. Here is the job description. Interested candidates please send a CV and letter of interest to Sean Singh at sean@hemoalliance.org.
 

Director Community Relations

Summary:
The Director of Operations and Member Support reports to the Senior Vice President, Marketing and Operations of the Hemophilia Alliance. The position is responsible for the daily operations and interactions with member centers and external partners. The Hemophilia Alliance operations and member support include but are not limited to:

Key Functions:

1. Supports the mission of the Hemophilia Alliance “The Hemophilia Alliance works to ensure member Hemophilia Treatment Centers (HTC) have the expertise, resources and public support to sustain their integrated clinical and pharmacy services for individuals with bleeding and clotting disorders.”
2. Meets with HTCs and institution personnel with a commitment to improve, educate and support the center’s efforts to take care of their patient and sustain their HTC.
3. Have an understanding and remain current with the 340B Program rules, regulations and potential changes that may impact members.
4. Work with confidential information and uses discretion when interacting with members, partners, manufacturers and the public.
5. Public speaking at meetings, conferences, patient events as directed.
6. Conducts video and phone conferences effectively and efficiently while using current technology in a variety of platforms.
7. Committed to learning and educating how the Hemophilia Alliance supports the bleeding disorders community.
8. Have an understanding on working on websites and technology skills. Proficient in Microsoft Office.
9. Participates in the development and implementation of the approved communications strategic plan.
10. Participates in Federal and State initiatives that affect the 340B program.
11. Provides operational training, technical and regulatory guidance and assistance so HTCs can effectively manage and operate their pharmacy programs.
12. Collaborate with national, state and local patient advocacy organizations.
13. Attends conferences and trade organization meetings as requested to stay current with market trends and promote member HTCs as Centers of Excellence.
14. Work with the Hemophilia Alliance GPO, Advocacy, Payer Relations, Membership, and Communication teams/consultants to provide operational support and assistance as necessary.
15. Assist the Payer Relations Team with their ongoing efforts with insurance payers and member HTCs.
16. Highly motivated to take on other duties that arise as a result of changes in the bleeding disorders community and the healthcare arena.

Travel:
Approximately 40% of time traveling to HTCs, conferences, member HTCs and advocacy events is expected. Must possess a valid driver’s license and be able to travel.

Location:
This position will be based on the East Coast of the US. The position will cover member centers in the North East.

Qualifications/Experience:

1. Knowledge of hemophilia and bleeding disorders that has been gained by working in and or by being a member of bleeding disorders community.
2. Understanding the business of the healthcare market.
3. Ability to work independently and on a virtual team.
4. While working with a team, must be able to set and organize priorities and adapt to frequent change.
5. Excellent verbal, written and interpersonal communication skills.
6. Strong analytical, financial and organizational skills.
7. Highly motivated to use, interact and develop technology.
8. Willingness to learn and gain knowledge.
9. Must possess a personal presence that is characterized by a sense of honesty, integrity, and caring with the ability to inspire and motivate others to promote the philosophy, vision, mission, goals, and values of the Hemophilia Alliance.

Preferred Qualifications:

1. Bachelor’s Degree.
2. Five or more years professional experience in the bleeding disorders community.

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