In 2012, WGFRF applied two areas of interest – neuroblastoma and nurturing collaboration – to the neuroblastoma foundation world, by spearheading the Consortium of Neuroblastoma Foundations. WGFRF took this step after its global analysis of neuroblastoma research to identify ‘gaps’ in need of attention that may be slowing research progress. One of the outcomes of the resulting Neuroblastoma Research Landscape* was the finding that collectively, foundations are major funders of neuroblastoma research. During the period 2008-2012, foundations committed around $35 Million to neuroblastoma research – about 50% of the amount committed by the National Institutes of Health in the same period. Therefore although each foundation may support only a little research, together they are potentially powerful players in the neuroblastoma arena.
The Neuroblastoma Research Landscape identified over 50 foundations of various sizes whose mission is fully or partly focused on neuroblastoma. There are past and current examples of neuroblastoma collaborations between two or more foundations, but no effort has connected neuroblastoma foundations globally. WGFRF surveyed the 50+ foundations identified to ask if there would be interest in such an initiative. A number of positive responses were received, and the Consortium of Neuroblastoma Foundations was born. The Consortium has met by phone every 3 months since September 2012, has drafted an Operations Plan and commenced development of a website (www.neuroblastomaconsortium.org).
The Consortium aims to serve three populations –families, foundations, and medical researchers – by providing an online platform for sharing neuroblastoma resources that have been created by member organizations. By centralizing existing information from different foundations, rather than ‘reinventing the wheel’, the Consortium hopes to create a streamlined resource in a near term timeframe. Consortium subcommittees currently guide the growth of each area. As the Consortium evolves a Scientific & Medical Advisory Board will be created.
Current Consortium participants include Bear Necessities Pediatric Cancer Foundation, Children’s Neuroblastoma Cancer Foundation, Just-In-Time Neuroblastoma Foundation, St. Baldrick’s Foundation, Soupy for Loopy Foundation, TeamConnor Childhood Cancer Foundation (United States); The James Fund for Neuroblastoma Research (Canada); Neuroblastoma Society (United Kingdom); and Villa Joep (The Netherlands). A number of other foundations have expressed interest and we expect the number to grow as the Consortium takes shape.
Perhaps the most significant accomplishment to date is that the Consortium has been recognized by the Advances in Neuroblastoma Research Association (ANRA) the leading professional neuroblastoma association. The Consortium has been approved by ANRA to participate in the next ANR International Meeting in May 2014 in Cologne, Germany. The Consortium will hold a one-day meeting prior to the main ANR conference, and it is anticipated to be an exciting opportunity to share the Consortium’s goals and – by then – accomplishments with the international neuroblastoma community.