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.
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?