Finally the rare disease community has a symbol of hope – the Genes Ribbon for rare and genetic disease awareness.
With a community of 30 million strong in the US and equal the same numbers in the EU, this community is deserving of the same energy, efforts, attention and support as some of the big individual diseases like AIDS and Breast Cancer.
We live in a time when we have seen huge success from organizations engaging and building a constituencies for their disease and from outside the community – and for the first time, the rare disease community is coming together to create a broad unifying campaign that will educate, inform and transform this community as we know it. This will be the year for the rare disease community – our coming out, of sorts.
There is a lot planned that will benefit this community in Q1 – John Crowley movie, ‘Extraordinary Measures’, 3-Part PBS Series on technology innovations and the impact on rare disease, and the 2nd Annual World Rare Disease Day. The Global Genes Project will become a catalyst for this community and provide a platform for ongoing outreach and engagement, garnering the much needed support that these kids deserve.
Check out www.globalgenes.org and join the effort on Facebook as well. There will be numerous opportunities and ideas on how individuals, rare disease organizations and corporations can get involved. It can be as easy as wearing denim jeans and incorporating the adorable/identifiable genes ribbon on your site/blog, etc.