In January 2010, a collaborative project ensued called the Global Genes Project. The mission – to build a platform that would create greater awareness about the prevalence of rare disease and it’s impact on children and their families. Provide an educational platform to better inform those within the rare disease community and educate the greater public about disease, and lastly provide an umbrella platform for individual disease fundraising – creating a fun, innovative platform to help inspire new champions to help our community.
The team, comprised of about 8 parent advocates representing various diseases, including the amazing creative team from Charleston|Orwig, launched the initiative in January 2010, just in time to help promote World Rare Disease Day! In 4 weeks, over 150 organizations joined the effort, and the brilliant slogan, ‘hope. it’s in your genes’ was translated into 29 languages. Additionally, various disease organizations were able to utilize customizable resources to help aid in mini-fundraising efforts in their local areas.
What was so inspiring was the feedback from the community, and the proof that when we all come together, we can move mountains.
We have had additional organizations get involved and some join the Project committee! There are a lot of exciting announcements that will be made over the next couple of weeks – all of which will provide big opportunities for individual disease groups and to help continue to build traction within the general public.
Let’s keep this train rollin’! Send us feedback, thoughts, ideas, your successes and be part of the evolution and build out of the ‘next big cause’!
The Global Genes Team!

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