Nbia Disorders Association

Research: the Association raises money to fund grants & clinical projects for scientific and medical research to assist in finding a cure for Nbia Disorders. In this year $278,815.61 was raised for research. This year the Association awarded three Nbia research grants totaling $152,220.00. Additionally the Association participates in holding international scientific symposia every two years. The symposium provides a forum for researchers to share information and common interests laying the groundwork for potential collaborations in the future. The eighth international scientific symposium was held from october 13th to 15th 2022 in lausanne switzerland. The ninth symposium will be held in 2024 in istanbul turkey.

Nbia alliance: the Association is acting as fiscal agent for the Nbia alliance. The alliance is an umbrella organization for Nbia patient advocacy nonprofit associations in ten countries. The alliance works to further Nbia research and helps to maintain an international patient registry and biobank.

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. Family conferences are held every two years. Conferences provide a forum for Nbia affected families from around the world to network receive information about research and treatments share information and support each other. The 12th international family conference was held may 18th 21st 2023 in houston Texas. The 13th family conference will be held in greenville south carolina in 2025. Also 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 emotional support and to share information. These functions also help promote awareness and educate the public and the medical community about Nbia Disorders.