01/05/2025
Familias PLAN
We’re thrilled to share a major milestone for the NBIA community: the first-ever consensus care guidelines for treating and managing PLAN (PLA2G6-associated neurodegeneration) are now completed and officially published!
Check out the publication here, which is open access in the Journal of Child Neurology: https://journals.sagepub.com/doi/10.1177/08830738251323649
This achievement is the result of a powerful international collaboration, made possible through the support of four dedicated organizations: the NBIA Disorders Association, the INADcure Foundation, Associazione Italiana Sindromi Neurodegenerative da Accumulo di Ferro (AISNAF) in Italy, and Hoffnungsbaum e.V. in Germany. Their shared commitment to advancing care for individuals with NBIA has helped bring this important resource to life.
These guidelines provide clinicians with comprehensive, expert-driven recommendations on the best and most acceptable approaches to diagnosing, managing, and treating PLAN and its three subtypes. Topics covered include diagnostic evaluation, initial management, pharmacologic and surgical treatments, monitoring for disease complications, emergency care, educational and nutritional support, psychosocial care, and other essential aspects identified by experts and community input.
Just as care guidelines have already made a transformative difference in the treatment and management of BPAN and PKAN, we anticipate these new PLAN guidelines will have a profound impact on the quality of care and support available to families around the world.
Dr. Susan Hayflick of OHSU was the principal investigator, working with colleagues Dr. Jennifer Wilson as lead writer and Allison Gregory, MS, as project leader. Our NBIADA community played on important role in the development of this publication, with authors including our very own Patty Wood (Founder and Research Program Director), Amber Denton (President), and Matt Ritzman (Board Member).
