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Partners Engaging for Spina Bifida and Hydrocephalus Prevention and Care

Collaborating to improve child health globally

“Game-changer”, “Hope”, “Collaboration”, “Commitment”, “Inspired”. These are just some of the terms used by participants of the Spina Bifida and Hydrocephalus Partner Engagement Meeting held in Boston, Massachusetts on April 11, 2014 when they were asked to sum up the day-long meeting.  The meeting, organized by Boston Children’s Hospital, the International Federation for Spina Bifida and Hydrocephalus, and CDC’s National Center on Birth Defects and Developmental Disabilities, brought together representatives from 21 different organizations in academia, health services, private and public sectors, to explore synergies to strengthen global efforts for the primary prevention of spina bifida, as well as the care of persons impacted by spina bifida and hydrocephalus.

Many organizations around the world focus efforts on both primary prevention of spina bifida and hydrocephalus, as well as secondary care for those children and adults living with these conditions. This meeting was a collective discussion among these organizations to advance spina bifida and hydrocephalus prevention and care together. Central to the discussion were the challenges related to sustaining individual organizational efforts and remaining visible in a time of competing priorities and limited budgets.

The theme of the meeting was “Better Together”. This theme underscored how strategic partnerships can help increase visibility of an issue, allow for sharing of expertise and strategies, mobilize resources, and decrease duplication of efforts. Coming together to address challenges can help advance research, and strengthen and move forward prevention and care efforts.

During the meeting, participants provided overviews of their work, and gave examples of successful partnerships they had cultivated. They also engaged in an active dialogue seeking commitment, identifying core values, and exploring a shared purpose and formation of a consortium. In the end, three primary outcomes were realized: (1) the group reached a consensus to move forward with developing a consortium to advance global prevention, care and research efforts for spina bifida and hydrocephalus; (2) participants identified collaboration as an essential core value for a consortium; and (3) the group affirmed the need to establish a shared purpose to help focus and direct efforts of a consortium. Additional partners will be solicited to engage in this emerging effort, and a steering group will be formed to help advance development of a consortium.

This meeting launched what promises to be an important first step in a much needed collaborative effort to improve child health globally.

For more information about the Spina Bifida and Hydrocephalus Partner Engagement Meeting, or to learn more about how to become involved in this effort, please contact Ms. Aliki P. Weakland at


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