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Global Genes™
October 16, 2013

I never knew the vast # of people who have a rare disease, until this organization began. With the # of people worldwide, it's really not so "rare". I believe in the tireless work that the group is doing to help advance research in this area, advocate for patients and families, and to celebrate what it means to have a rare disease by bringing the community together. I also love that it started from a true grassroots effort and enjoy seeing it grow.

Ways to make it better...

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

Get more resources and money for the group and the patients it serves.

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For the time you spent, how much of an impact did you feel your work or activity had?

A lot

Did the organization use your time wisely?

Very Well

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