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CIBMTR

Consumer Advocacy Committee

Sharing knowledge. Sharing Hope.
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Consumer Advocacy Committee

The Consumer Advocacy Committee provides valuable patient and donor perspectives for the development of the CIBMTR research agenda.

Responsibilities

  • Provide a consumer perspective on the CIBMTR research agenda through participation in Working Committees and RCI BMT
  • Provide input to CIBMTR on adapting hematopoietic cell transplantation (HCT) research publications for use by the general public
  • Promote awareness among patients regarding research opportunities
  • Advise the CIBMTR on ways to increase patient participation in research
  • May submit research ideas to appropriate Working Committees

Membership

Members are appointed by the Advisory Committee, based on recommendations from a CIBMTR application review panel, and include:

  • Nine voting members who serve for up to two consecutive three-year terms. These members are involved with HCT either as a patient, caregiver, family member, donor or staff person/volunteer with an agency that interacts with HCT patients or donors
  • Ex-officio members from CIBMTR, the National Marrow Donor Program® (NMDP)/Be The Match® and the Health Resources and Services Administration (HRSA)

In addition, committee membership strives to represent a diversity of backgrounds, including persons who:

  • Understand adult and/or pediatric HCT issues
  • Are familiar with cord blood transplantation
  • Have been or understand the needs of a related and/or unrelated donors
  • Understand issues that affect access to or outcomes of HCT secondary to demographics and diversity
  • Do not have access to the Internet, or are aware of how people without access to the Internet get their information
  • Are actively involved in HCT-related research
  • Have marketing, communications or professional writing experience

Meetings

  • The Consumer Advocacy Committee meets annually at the BMT Tandem Meetings and periodically via conference calls
  • Works on CAC projects, beyond teleconferences, as needed
Co-Chairs
​Jeffery Haertling​Tierra Verde, FL
Hilary HallDana Farber Cancer Institute, Cambridge, MA

 

Members
Jack Aiello ​San Jose, CA
​Maureen Beaman​Milwaukee, WI
James Omel, MD (retired professional) Grand Island, ME
Kristin Scheeler ​Leukemia & Lymphoma Society, White Plains, NY
Jennifer Wilder National Institutes of Health, Bethesda, MD

Scientific Director
J. Douglas Rizzo, MD, MS CIBMTR, Milwaukee, WI

Ex-Officio
Linda Burns, MD ​NMDP/Be The Match, Minneapolis, MN
Jeffrey Chell, MD NMDP/Be The Match, Minneapolis, MN
Dennis Confer, MD CIBMTR, Minneapolis, MN
Ellen Denzen, MBA, MS NMDP/Be The Match, Minneapolis, MN
Carol Doleysh, BS (CIBMTR liaison) CIBMTR, Milwaukee, WI
Rebecca Drexler, BS, AAS CIBMTR, Minneapolis, MN
Jessica Gillis-Smith, MPH ​CIBMTR, Milwaukee, WI
Shelley Grant, MHSA ​Health Resources and Services Administration, Rockville, MD
Mary Horowitz, MD, MS CIBMTR, Milwaukee, WI
Elizabeth Murphy, EdD, RN (NMDP liaison) NMDP/Be The Match, Minneapolis, MN
Christine Nishiguchi, MS, MPH ​Health Resources and Services Administration, Rockville, MD
Bronwen Shaw, MD, PhD ​CIBMTR, Milwaukee, WI
Patricia Steinert, PhD, MBA ​CIBMTR, Milwaukee, WI

Last Updated: 4/14/2017 12:15 PM
CIBMTR