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Review for Global Genes®, Aliso Viejo, CA, USA

Rating: 5 stars  

The Global Genes Project is an incredibly important organization, without which, many small rare disease organizations and patient advocates would never receive the education they need to make an impact. Besides distributing informational toolkits on things like how to start a non-profit and what sort of patient tools are available out there for patients to use--they provide a place for a community to get involved. Between their website, rare meet-ups, blog and social networks--The Global Genes Project provides both a physical and virtual haven for patients, parents, advocates, and the general public.

At this year's 2nd Annual Tribute to Champions of Hope Gala they raised money specifically to go to families in need of immediate genetic testing to uncover their rare diagnosis and end a horrible, confusing and what can often be VERY expensive journey for families to go through.

They also provide a continuously updated "Rare List" including all of the known rare diseases affecting patients internationally.

If I had to make changes to this organization, I would...

Hope that they receive even more global awareness about their efforts!

How does this organization compare with others in the same sector?

Very Well

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