Nbia Disorders Association

Education & Support: This program encompasses many areas of work by the organization. The association publishes a free newsletter three times per year. The newsletter promotes awareness of NBIA educates the public and medical community about these rare disorders supports affected families and disseminates information on NBIA research and treatments. The association responds to general emails from NBIA families from the public and others in addition to all dissemination activities. The association maintains a web presence at www.nbiadisorders.org which provides a database of current accurate information on NBIA. The association also holds virtual webinars on topics of interest throughout the year and has Zoom support group meetings for NBIA families. The association has a networking program a Facebook group & Facebook cause page is on Twitter Instagram and LinkedIn has multiple videos posted on an NBIA YouTube channel and has a volunteer social media director. These all provide a forum for affected individuals their families caregivers and others affected by someone living with NBIA to receive support.

NBIA Alliance: The association is acting as fiscal agent for the NBIA Alliance. The Alliance is an umbrella organization for NBIA patient advocacy nonprofit organizations in ten countries. The Alliance works to further NBIA research and helps to maintain an international patient registry and biobank.