I've personally experienced the results of this organization in...
every aspect of our life. Without them there would be no coding for a diagnosis so our insurance could help pay for the medications and supplies we need to keep my son alive. They also provide training for the medical community.
What I've enjoyed the most about my experience with this nonprofit is...
the support they provide for families struggling with the diagnosis of a rare disease.
The kinds of staff and volunteers that I met were...
the most caring and knowledgeable people I have ever met.
If this organization had 10 million bucks, it could...
teach the world about this disease that robs our children of the ability to eat and causes so much pain. They could donate enough money to researchers to find a cure for our children.
How frequently have you been involved with the organization?
About every week
When was your last experience with this nonprofit?