NBIA Disorders Association family conference sessions now available online
The virtual conference platform is now open to all, free of charge, so interested families with English proficiency can view those sessions that are available as recordings. The program includes patient-focused research updates and information from NBIA specialists at Oregon Health & Science University in Portland, USA, and other NBIA scientists on clinically relevant issues for the most common NBIA forms PKAN, BPAN, MPAN, PLAN, and FAHN. In addition, there are cross-variant sessions on special topics such as dental health, nutritional problems, among others, as well as tips for fundraising and public relations.
Interested parties can find this and much more at this link: https://nbiaconference.org/ In order to be able to access the lectures, one must register there in advance free of charge.
The NBIA Disorders Association also celebrates its 25th anniversary in September. We would like to take this opportunity to congratulate our sister organization, without whose encouraging example many NBIA associations in the world would probably not exist. Also Hoffnungsbaum e.V. owes much to the NBIA Disorders Association with its extremely dedicated chairperson Patricia Wood (Founding history). We wish this beacon of the NBIA patient movement continued success and radiance.
