NBIA Disorders Association family conference sessions now available online

from | August 1, 2021

The virtual conference platform is now open to all, free of charge, so that interested English-speaking families 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 questions 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 and nutritional problems, as well as tips for fundraising and public relations.

This and much more can be found under this link: https://nbiaconference.org/ In order to access the lectures, you have to register for free beforehand.

The NBIA Disorders Association is also celebrating its 25th anniversary in September. We would like to take this opportunity to congratulate our big sister organization on this anniversary, without whose encouraging example there would probably not be many NBIA associations in the world. Also Hoffnungsbaum e.V. also owes a great deal to the NBIA Disorders Association and its extremely dedicated chairperson Patricia Wood (Founding history). We wish this beacon of the NBIA patient movement much continued success and radiance.

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