• 11th International Family Conference

    Being held VIRTUALLY May 20-23, 2021


  • NBIA Online Merchandise Store

    Check out all of our new products!


  • Demystifying Research Grants:
    Deciding Where Your Money Goes

    Our webinar from 8/13/20 is now available to watch on-demand.


  • Living with NBIA During the COVID-19 Pandemic

    Information, Emergency Information Form, and Webinar Recording


  • Beacon of Hope Campaign

    Please help with our Beacon of Hope campaign for family support.


  • 1
  • 2
  • 3
  • 4
  • 5


Record number takes part in 7th Scientific Symposium on NBIA

October 2020

The 7th International Symposium on NBIA & Related Disorders, held as a virtual event for the first time ever, attracted 160 participants from 26 countries.

Read More

BPAN Research Updates

October 2020

Professor Robin Ketteler and his team at University College London have completed drug screening for potential BPAN therapies and identified several candidates that will advance to the next level of testing.
Read More
A research team in the Netherlands is making progress in its study of how mutations in the WDR45 gene affect beta-propeller protein-associated neurodegeneration (BPAN).
Read More
Ongoing BPAN research, funded by the NBIA Disorders Association, is producing new insights into iron accumulation and cell damage in individuals who have Beta-propeller protein-associated neurodegeneration.
Read More
A recently completed BPAN study supported by the NBIA Disorders Association has led to a new understanding of how a genetic flaw causes the disorder and how it could be corrected.
Read More

Hoffnungsbaum e.V funds MPAN project at Helmholtz Zentrum Center in Munich

October 2020

A lab in Germany investigating the disease mechanisms in Mitochondrial Membrane Protein Associated Neurodegeneration (MPAN) received a grant of €151,540 euros ($178,741 USD) from Hoffnungsbaum e.V, the German NBIA patient organization.

Read More


Partners in Hope Monthly Giving

Ritzman family

Please consider becoming a "Partner in Hope" monthly giver.

Become a Partner in Hope

2020 Top-Rated Nonprofit Award

2019 Top-rated Nonprofit

We have been honored with our second consecutive year of receiving a Top-Rated Award from GreatNonprofits! We appreciate all of your contributions!

More Info

Drew and his mother walking down a hallway

NBIA Alliance

Donate Now

Connect with Us - NBIA Families and Friends

Sign-up for our Newsletter