Mission: In our drive to find a cure for nbia, we provide support to families, educate the public and accelerate research with collaborators from around the world.
Programs: Research grantsthe association raises money to fund grants for scientific and medical research to assist in finding a cure for nbia. In this year, $146,853 was raised for research; the association has awarded three grants totaling $202,725.
family conferencefamily conferences are held every two to three years. They provide a meeting for nbia-affected families from around the world to network, receive information about research and treatments, share information, and support eachother. There is also the opportunity for families to meet individually with nbia medical experts and receive advice on treatment options. The eighth international family conference was held in minneapolis in may 2015. A record number of participants, 175 people from seven countries attended.
education & supportthis program encompasses many areas of work by the organization. All responses to general emails from nbia families, from the public and others are handled by this program, in addition to all dissemination activities. The association maintains a web presence at www. Nbiadisorders. Org which provides a database of current and accurate information on nbia. The association also moderates a group forum, has a networking program and a social media director, has a facebook group & facebook cause page, is on twitter and linked-in, and has multiple videos posted on an nbia you-tube channel. These all provide a forum for affected individuals, their families, caregivers and others affected by someone living with nbia to receive emotional support and to share information. These functions also help promote awareness and educate the public and the medical community about nbia disorders.