This short video provides valuable information about the NBIA Disorders Association network of support services for newly diagnosed NBIA families.
The NBIA Disorders Association board chose three projects among 19 applications to receive grants totaling $157,725 this year, enabling researchers to study three different forms of NBIA.
The grants will further research into Pantothenate Kinase-Associated Neurodegeneration, or PKAN, Mitochondrial-membrane Protein-Associated Neurodegeneration, known as MPAN, and Beta-propeller Protein-Associated Neurodegeneration, or BPAN. ...More
The NBIA Disorders Association Board of Trustees recently approved changes to the organization’s policy on research donations to add flexibility and to acknowledge the importance of donors being able to designate their gifts to specific disorders. ...More
Do you have a skill, an area of expertise or a passion to help improve the lives of NBIA individuals and their loved ones? If so, the NBIA Disorders Association Board of Trustees wants you! ...More
he NBIA Disorders Association is pleased to announce that it has won an award from DonorPro, a donor management and fundraising software provider.
Our organization partners with DonorPro to help us raise more money and efficiently manage our relationships with donors. We won the award for "Best Digital Fundraising Performance." We received a check for $250, a certificate and valuable consulting services and training. ...More
Play 100 holes of golf in 1 day! The NBIA Golf Marathon is a day of fun at the Lake Arthur Country Club in Butler, PA. This year, golfers, virtual golfers and caddies will raise money to support research and support services that assist children and adults who suffer from NBIA. ...More
New campaign for BPAN research exceeds goal! The We CAN for BPAN Campaign, featuring our mascot PAN, began on June 15, and in just five weeks, it exceeded the goal of raising $40,000. Donations are still coming in and will be put toward other BPAN research projects. ...More
Our Eighth International NBIA Disorders Association Family Conference was held May 28-31, 2015. Site of the conference was the Embassy Suites Minneapolis North in Brooklyn Center, Minn. ...More
The first family and professional conference for NBIA disorders will be held in Barcelona, Spain, November 13-14, 2015.
This meeting will include the participation of renowned international researchers discussing their work. ...More
The Associazione Italiana Sindromi Neurodegenerative Da Accumulo Di Ferro (AISNAF) is holding their first family meeting at the Green Park Hotel in Bologna, Italy, October 10-11, 2015. Researchers, including Dr. Susan Hayflick, Director of the NBIA Disorders Association Scientific & Medical Advisory Board, will be discussing their research, and clinicians familiar with NBIA disorders will also be participating and sharing their knowledge. ...More
NBIA Canada has joined the NBIA Alliance. They are a newly formed group, led by Michelle Sheppard-Whalen. Michelle’s son Landon was diagnosed with FAHN in spring, 2014. They are reaching out to other Canadian NBIA families to connect and work together to increase research and awareness in Canada. ...More