My Nonprofit Reviews

NBIA Disorders Association has been a godsend to our family. Our daughter Sydney was diagnosed with BPAN, one of the 11 NBIA Disorders, in January of 2016. We were devastated. After coming across the support system that NBIA Disorders Association offers were were made to feel welcome, as well as connected to a community of those that were walking in our shoes.

NBIA Disorders Association partners with researchers all over the world to be sure that new and innovative research practices are being offered to our community. They fund grants to researchers that are highly respected in their fields to get as many minds on NBIA Disorders as possible. With BPAN, there are no treatments, and there's no cure. I fully trust the team at NBIA Disorders Association to pave the way for a brighter future for my child and those that follow.

NBIA Disorders Association hosts a NBIA Family Conference every two years, which gives a chance for our families to come together from across the globe and band together for our children. At the conference we are updated on the latest research being done, as well as things that may be on the horizon. We attend sessions that are unique to our individual daily struggles so we can obtain information and support from fellow families. At the conference, you feel at home, even though you may have traveled across the globe.

Being a part of NBIA Disorders Association makes you feel as though you are truly not alone on this journey that makes you feel like you are a lone survivor on an island.

The Denton Family
Houston, Texas