I feel a need to respond to the two critical reviews I read here. They focus on the degree to which the organization features their CEO, the salaries of the CEO and other key personnel, the fact that a large part of their revenue is from services provided rather than donations, and the reviewers' impression that the organization is not serving their communities. These reviews are somewhat dated and I think mistaken in their focus. I serve on many non-profit boards and have considerable experience with these issues. I am on the board of an organization that is a client of Genetic Alliance but I am not currently and have never in the past had any other connection with Genetic Alliance. I was not solicited to write this review. They don't even know I'm doing it.
Genetic Alliance has a rather sophisticated web-based platform for registries and we are using that. The cost was minimal compared to our other options. Regarding the concern that the company derives much of its revenues from services, this is not dissimilar to many important non-profits like hospitals and universities. It's a non-profit because it doesn't have shareholders receiving profits, not because it does not ever charge for its services. This is a perfectly acceptable model for a non-profit organization and is the most appropriate model for certain roles. In 2016 they reported $1.86M in contributions and grants vs. $1.75M in program revenue.
I don't know why one of the reviewers spoke of their "experience" with the organization but in their comments did not describe any actual experiences. We found they have worked very hard for us and have been impressed.
Regarding the salary for officers and key personnel, I see from their form 990 that in 2016 it was about 15% of their income. The CEO earns $265k, and the other key staff were in the $125k range. We recently hired a consulting firm for another non-profit I'm involved with that is of similar size, so I can tell you that the Genetic Alliance CEO salary would be about at the 75th percentile. So, 25% of companies pay more, 75% pay less. It's on the high side, but I have found that non-profits must compete with the for-profit world to acquire and retain talent. We have a similar situation in the other organization and the board has determined the salary is in the best interest of the organization. The reviewers seem to feel it is somehow wrong to feature a CEO strongly in marketing materials. That's a decision for the board and should be based on many factors. In the case of Genetic Alliance, the CEO has been featured as a TED Talk Speaker. One reviewer criticized the company for not promoting their programs that benefit the genetic disorders communities. Perhaps they should do more in that regard. They certainly have something to promote with their registry platform and its low cost structure.
Finally, I cannot comment on whether they share data with pharmaceutical companies, but the key question is whether any such data sharing is done legally, with the permission of the individuals. The registry platform has elaborate safeguards and participants can designate whether their data may be shared with various specific parties. This is important for drug development to address the problems these communities face and is hardly unethical if the proper permissions are in place. There is nothing wrong with deriving revenue from such a program.
I give it 4 stars for now, since my experience with the organization is still early, but I can easily imagine giving it 5 stars. Of course, if I am disappointed, it could also go down! I think I have far more experience with Genetic Alliance than the other two reviewers, though, based on their brief comments.
Review from Guidestar
Our experience with this organization has been similar. We find that the organization shamelessly promotes their CEO Sharon Terry, not the value of their programs. 2013 tax return shows $22,000 in donations, $1.7M in 'sales' operates more like a for-profit.
Review from Guidestar
30% of the total funds go to 4 people's salary. The CEO makes over $250,000 a year - which is more than many charities that have 100 times the funds. They sell member provided information to for-profit pharmaceutical companies. This type of organization does not function like a non-profit organization, they are very profit driven and spent less then 5% on programs that benefit the genetic disease community.
Review from Guidestar