The committee arranged for seven background papers, which are readable online ( as Appendixes B through H. It also conducted a one-day meeting to hear views from family support and advocacy organizations and health care groups, and it invited written statements from additional organizations. In addition, the committee met for a half-day with parents whose children had died from or were living with life-threatening medical problems. Both meetings were open to the public. The agendas and participants are listed below as are additional groups that submitted written statements to the committee.

Public Meeting

Lecture Room, National Academy of Sciences

2101 Constitution Avenue NW, Washington, DC.

Saturday, September 8, 2001


8:30 a.m.

Welcome and Introductions

Richard Behrman, M.D., Chair

8:40-9:20 a.m

Panel 1

The Compassionate Friends, Inc.

Patricia A. Loder

Candlelighters: Childhood Cancer Foundation

Ruth Hoffman

National Organization of Parents of Murdered Children

Jean Lewis

9:20-10:00 a.m.

Panel 2

SIDS Alliance

Deborah Boyd

MISS - Mothers in Sympathy and Support

Richard K. Olsen


Michael R. Berman, M.D.

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