My Nonprofit Reviews

We spent 8 years searching for a diagnosis for my daughter's condition. We were devastated when we got the news that her condition was untreatable and progressive. The physicians recommended that we contact NBIA Disorders Association, the family support group and attend the upcoming conference.

The NBIA Disorders Association helped us connect with other families that had been in our situation. The Association shared the research with us, and showed us that there are many people throughout the world working on this problem.

The NBIA Disorders Association has created a community and funded research which has led to discoveries. It partners with other rare disease organizations throughout the world. It has developed an incredible network of volunteers, researchers and physicians. It is constantly putting together grants for new research. It tracks the progress of all the research taking place and makes that information freely available to families and researchers.

After a few years of enjoying the information and community that the NBIA Disorders Association makes available, I was invited to join the Board of Directors. It has been eye opening to see just how considerate, generous, and driven the organization is. It has been a pleasure to serve with them.

The NBIA Disorders Association gave us hope and connection and opportunities to make contributions to help in finding cures and treatment for my daughter's disease. I have been blessed to be a part of it.