September 16, 2013
This is a RARE non profit that knows its target audience and how to elevate and motivate them. (Like what I did there..get it RARE?) A lot of groups with great intentions attempt to get off the ground and fumble with direction. In the short time I've volunteered with the Global Genes RARE Project after finding support for a rare diagnosis in my own family I learned that the people here are motivated and doers. There is much more action because of all the talk by this group than most any other out there. The leaders are true leaders in the sense they inspire others to do more and be better.
Ways to make it better...
If I had to make changes to this organization, I would...
Expand its reach. Every physician should provide a link to this network to newly or undiagnosed patients. There is still plenty to learn with an old diagnosis too by getting involved with this group.
Would you volunteer for this group again?
For the time you spent, how much of an impact did you feel your work or activity had?
Did the organization use your time wisely?
Would you recommend this group to a friend?
When was your last experience with this nonprofit?