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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
Maureen Beaman Milwaukee, WI, United States
Jeffrey Haertling Tierra Verde, FL, United States

Members
Beatrice Abetti Leukemia & Lymphoma Society, White Plains, NY, United States
Jack Aiello ​San Jose, CA, United States
Gerardo Camarillo M.D. Anderson Family Advisory Council, Houston, TX, United States 
Hilary Hall Dana-Farber Cancer Institute, Cambridge, MA, United States
James Omel, MD (retired professional) Grand Island, ME, United States
Kristin Scheeler ​University of Wisconsin Hospital and Clinics, Madison, WI, United States
Jennifer Wilder National Institutes of Health, Bethesda, MD, United States

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

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

Last Updated: 12/30/2016 2:38 PM
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