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  • 20th Anniversary Celebration Campaign

    Together, we can make the next 20 years a time of triumph for the families who live with these disorders every day.
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  • Corporate Affiliate Program

    Can your corporation help us continue our work for our loved ones?
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  • 20th Anniversary Celebration Info

    It’s time to celebrate!
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  • We Will Never Give Up Hope Campaign

    We Will Never Give Up Hope

    Please support our new fundraising campaign for FAHN research.
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  • The story of a newly diagnosed NBIA family

    This short video provides valuable information about the NBIA Disorders Association network of support services for newly diagnosed NBIA families.
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  • Grants Program

    3 grants awarded in 2015
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  • News
  • Events
  • NBIA Alliance News

NBIA Disorders Association board awards nearly $160,000 in grants

NBIA Disorders Grant AwardsThe 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


New research policy taking effect

Research labThe 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


Request for Board & Development Members

NBIA Disorders Association Board of TrusteesDo 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


Organization wins award from DonorPro

Donor Pro logohe 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


(4th Biennial) NBIA Golf Marathon 2015

Golf Marathon 2015 logoPlay 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


We Can for BPAN


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


Eighth International Family Conference May 28-31, 2015

Eighth International Family Conference May 28-31, 2015Our 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


First family and professional conference for NBIA disorders to be held in Barcelona, Spain, November 13-14, 2015

ENACH Association logoThe 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


Italian NBIA organization holding first family conference October 10-11, 2015

AISNAF logoThe 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


Canadian Group Joins NBIA Alliance

NBIA Canada logoNBIA 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


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