(This article is written by Nicole Boice, Founder/President of the RARE Project, and was originally published on the Children’s Rare Disease Network Blog.  I am reposting it here because I strongly believe that as a community we are stronger than any individual.  By uniting, our voices can be heard.  This partnership, although hard for many rare disease organizations to accept, does not aim to take away a piece of anyone’s pie.  Rather, it will help increase the size of the pie so we can all work together to find cures faster.  -SG)

There exists an inherent need to bring more money into the rare disease community to fund research.  Individual rare disease specific organizations work tirelessly to try and raise capital to fund various research projects, with the hope of bringing new therapies, treatments and cures to their communities children.

Recently Jonathan Jacoby, CEO RARE Project and Nicole Boice, Founder/President, RARE Project announced the development of the Global Genes Fund at the Genetic Alliance Meeting held in Washington DC.   Jacoby and Boice, presented the project to rare disease foundations, scientists, parent advocates and some news media during the research symposium breakout sessions.  It was the perfect setting to announce the development of Global Genes Fund because this meeting was focused on developing collaborative initiatives to help facilitate more successful partnerships and help move the needle for the rare disease community as a whole.

The announcement and discussion was being made on behalf of the team behind the Global Genes Project, and those parent advocates and organizations that have worked so hard to help build the cause related campaign for the rare disease community!  Boice stated, ‘The Global Genes Project represents a true collaboration, a program developed ‘by the rare disease community, for the rare disease community.’”

With the addition of the Global Genes Fund, this initiative will be able to provide a capture mechanism for rare disease research funding in two ways; Individuals within the general populace will be able to fund rare disease research and will be able to choose what ‘in their lifetime’ research they are interested in supporting.   This will be accomplished by building a consumer facing platform (modeled after the successful micro-lending portal, kiva.org), and by the marketing and press efforts to engage the broader public that is being developed by Global Genes Project.

Second, with increasing interest by corporations to support this community of millions, the Global Genes Fund will exist to accept donations from corporate supporters that see value in supporting a large group of consumers/constituents,  and then will distribute the contributions to those research initiatives being promoted within the Fund.

“The goal is to bring new eyeballs, new money and new champions to support this community in need,” Boice stated.  “This will not take the place of disease organizations efforts but will provide an additional way to capture and build new donors who may not have known about rare disease or ever had an opportunity to give to one previously.”  The Global Genes Fund will offer this platform and campaign at no charge to the participants, however there will be a small commitment by the disease groups to help ensure the success.

So far, there has been tremendous support and excitement from rare disease advocates who see the value in a mechanism to bring new capital to this very underfunded community!  Expectations for launch will be  World Rare Disease Day 2011.

Until then, RARE Project will be working with advisers and the Global Genes team to develop the criteria for inclusion in this fund.  Organizations interested in learning more should contact Nicole Boice at nicoleb@rareproject.org.

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