The Nursing Working Group (NWG) is a professional working group under the organizational auspice of the Medical and Scientific Advisory Council (MASAC) of the National Bleeding Disorders Foundation (NBDF). The NWG consists of representatives from each of the 8 federal regions, as determined by the Maternal and Child Health Bureau (MCHB) guidelines and four senior committee positions. All 12 members have equal voting representation.

A registered nurse with a minimum of 2 years total experience in bleeding disorders and currently employed by a federally funded Hemophilia Treatment Center (HTC)

  • All terms will begin after the NBDF Bleeding Disorders Conference (BDC) has concluded
  • Incoming members are encouraged to attend the NWG meeting immediately prior to their term.  However, it is not mandatory as there is no travel funding for incoming members to attend
  • Meals are provided during the NWG meetings
  • Nurses may serve a maximum of 2 (8 years) consecutive terms on the NWG.  This 8 years may consist of a variation of service on different positions. 
  • After a holiday of one year, if re-elected by their region, a nurse may serve again. 



The NWG is made up of 12 members:  4 officials: Chair, Chair Elect, 2 Senior Committee Members, and one representative from each of the 8 MCHB regions. 

  • All members have equal voting representation
  • The group operates as a unit and no members meet independent of the entire group setting except as designated for committee work
  • All committees present to the NWG for approval of any changes in their roles or guidelines
  • NWG members do not act on behalf of the NWG without approval of the NWG Chair and members



  • Consists of 4 members to include the chair, chair elect and 2 senior committee members.
  • A term for these positions is defined as a 2-year responsibility. 



  • This is a 1 term (2-year) responsibility following completion of the chair elect role


Responsibilities include:

  • Attend the NBDF Bleeding Disorders Conference
  • Overall coordination for the NWG and designation of NWG activities.
  • Liaison to NBDF
  • Liaison to MASAC (Medical and Scientific Advisory Council)
  • The Chair is the contact for all communications coming into the group and is copied on all communications related to the NWG



  • This is a 2 term (4-year) responsibility: 2 years as Chair Elect followed by 2 years as Chair
  • The Chair Elect is elected by the NWG members
  • This role will serve and be mentored by the Chair for 1 term (2-years)
  • Should the Chair be unable to complete their term, the Chair Elect is expected to assume the role of Chair
  • It is preferred this person have a minimum of two years of experience on the NWG prior to accepting this NWG elected position


Responsibilities include:

  • Attend the NBDF Bleeding Disorders Conference
  • Assist Chair with coordination of NWG activities
  • Serve as a resource for NWG members and committee members
  • Lead activities or task forces as needed and approved by Chair
  • Chairs the committee for Nurse of the Year and announces the award at BDC nursing luncheon



  • The SCM is elected by the NWG members
  • SCMs will serve for a maximum of 1 term (2-years) in this role
  • Eligible for election to Chair Elect position if does not exceed term limitations for NWG
  • Minimum of two years of experience on NWG required prior to election by NWG



Responsibilities include:

  • Attend the NBDF Bleeding Disorders Conference
  • Serve as a resource for NWG members and lead activities, committees or task forces as needed and approved by NWG and Chair
  • Serves as lead for the NBDF Bleeding Disorders Conference Planning Committee
    • NWG members are selected to coordinate the nurse and any nurse/physician or other combined sessions for NBDF Bleeding Disorder Conference each year. This position must always have at least one nurse with experience at the NBDF planning meeting. These two NWG Planning representatives are responsible to attend planning meetings and to distribute all necessary speaker forms, communications about the sessions and timeframe guidelines to all members of the NWG if there are no members from the NBDF team responsible for this task. Timely reminders of the deadlines and forms required and/or follow up on progress related to securing speakers is expected.





  • A term is defined as a 4-year responsibility.
  • A member can serve a maximum of 2 consecutive terms. Representatives may resign their term early to fulfill an (elected) senior committee role
  • Attempts should be made to stagger the terms so that no more than 3 regional representatives are rotating on/off the NWG at the same time.
  • It is the responsibility of the regional representative and/or the region to replace the leaving regional representative for the length of the remaining term, for any reason. This should be done promptly
  • If the representative position is vacated prior to completion of the term, the NWG may recommend and will vote to accept or deny the proposed term for the incoming representative. This will be done to maintain the rotation balance with other representatives in the group and the experience levels of members, when needed
  • If a vacated position is filled within 6 months of the next BDC, the members “term” will begin on that served year.  If the member starts their position during a time of <6 months from BDC, the first served “term” will begin following the annual conference.  


Responsibilities include:

  • Attend the NBDF Bleeding Disorders Conference
  • Plan, moderate and/or speak for a session at NBDF Bleeding Disorders Conference. (NWG members receive coverage for 4 hotel nights at NBDF Bleeding Disorders Conference.
  • Serve on a committee, task force or in a special appointment role
  • Maintain an active roster and communication with all nurses in their region.  This includes sending out communications from NBDF and the NWG to the region as well as communicating concerns from one’s region to other regions and the NWG
  • Each region may have specific duties for the regional representative. The NWG strongly encourages participation in the planning and activities of regional meetings by NWG members


Application Requirements for Regional Representatives


Although it is the responsibility of the Region to select the representative to the NWG, the NWG sets the following requirements:

  • Retiring representative notifies the region of the opportunity
  • Interested applicants who meet the requirements (see qualifications) submit the following as an application:
    • A letter of interest to include how they meet qualifications and why they are interested in participating
    • An updated curriculum vitae or professional resume
    • A letter of support from their HTC Director or appropriate supervisor.  This letter must acknowledge support for the professional commitment needed by NWG members, including attendance at the annual NBDF BDC
  • Selection is by regional vote. Whenever possible, the retiring representative should introduce the incoming representative to the group and provide an orientation to the NWG. If the retiring representative is not able to provide this service, the Chair will provide this service or designate a senior NWG member to provide the welcome and orientation



  1. Secretary: This role may be filled by any member of the NWG, with the exception of the Chair or Chair Elect. The secretary should commit to a minimum of 1 term (2-years) in this role


Responsibilities include:

  • Recording notes at all NBDF NWG meetings and phone conferences
  • Distribution of minutes to NWG members within two-week period following the meeting or call
  • Presentation of the minutes for approval by the NWG


  1. NBDF’s Nurse of the Year (NOY) Committee
  • This committee is chaired by the Chair Elect of the NWG
  • Guidelines for this selection process are available to NWG members. Any changes to the guidelines require a vote by the entire NWG. Changes to the guidelines may not be done independently by the committee


  1.  Scholarship Selection Committee
  • Guidelines for this selection process are available to NWG members. Any changes to the guidelines require a vote by the entire NWG. Changes to the guidelines may not be done independently by the committee


  1. Nursing Excellence Fellowship Committee
  • Guidelines for the NBDF Nursing Fellowship are available on the NBDF website. Any changes to the guidelines require a vote by the entire NWG. Changes to the guidelines may not be done independently by the committee.


  1. Liaison Roles / Recommendation to committees or task force projects:  The list of liaisons and recommendations from the NWG continues to grow and change as special projects may be started and completed. A complete listing is provided in the agenda for each in person NWG meeting and changes are noted in the meeting minutes.
  • Liaison positions may or may not be current NWG members
  • NWG should approve the nurse recommendations for these liaison roles
  • Nurses accepting such roles should agree to report back to the NWG in person, phone or written report with any significant concerns, accomplishments or at a minimum, progress reports annually





  1. Develop and Promote Standards of Nursing Practice In Hemophilia, Bleeding Disorders And Thrombophilia.  Example: Nurses Guide to Bleeding Disorders, Partners PRN


  1. Promote Professional Nursing Development in Hemophilia, Bleeding Disorders and Thrombophilia.  Example:  NBDF Meetings, Nursing Research, Continuing Education


  1. Promote Health and Education To Bleeding Disorder Community.  Example: Created educational material, Steps for living


  1. Advisory to MASAC: In relation to nursing practice, recommendations, education and research


  1. Actively initiate, plan, and assume responsibility for special NWG projects including the nursing programming portions of the NBDF Bleeding Disorders Conference
  2. Communicate with bleeding disorder nurses in your region regularly. Monitor and support nursing activities in your federal region
  3. Advocate for the concerns of bleeding disorder nurses
  4. Attend the annual in-person BDC as well as monthly NWG video conference meeting
  5. As needed, represent the NWG on various NBDF Committees and at related ambassadorial functions

Any NWG member who fails to carry out responsibilities and/or acts outside of the guidelines established for the NWG may have their membership terminated by the Chair.

Any NWG member that accepts a position outside of a federally funded Hemophilia Treatment Center (HTC) must also resign their position at the time that employment at the HTC is complete. 

Guideline Review

Guidelines will be reviewed on an as needed basis as determined by the current NWG membership; at a minimum every 4 years. Any changes to the guidelines must be approved by 75% of the current NWG members.

As situations arise not addressed in this document, the NWG will meet together along with NBDF staff liaison and determine appropriate course of action on a case by case basis.