We hope you will join us May 20 – 23 for our first-ever virtual conference as we mark 25 years of service and gather with NBIA individuals, families, caregivers, researchers, clinicians and biotech leaders from around the world.
Together we will continue to build connections within our larger NBIA family -- connections that make us stronger and more effective in our advocacy and efforts to discover effective NBIA therapeutics and CURES for all NBIA disorders.
We have an exciting lineup of speakers which can be found in our agenda. Some highlights are:
- Stress Rx: Stress Resilience and Sensory Care - Cristol Barrett O'Loughlin, CEO, Angel Aid Cares
- Path to Success: Advocating for your Child at School - Valerie Theile, M.Ed. and Lenora Nardelli, M.Ed
- Oral Health Q&A - Dr. Mark Karakourtis, Dr. Jerome McMahon, and Dr. Nicole White
- Importance of Natural History Studies in Rare Diseases - Dr. Eric Sid, Office of Rare Disease Research, NIH
In addition to our formal speaker program, we will also have many opportunities for you to engage with other members of the global NBIA community, including:
- Individual and family break out video networking sessions
- Virtual 25th Anniversary dance party hosted by our very own DJ Mike
- Daily meditation and yoga for all ability levels
- Photo booth to capture the fun from your own living room
We are happy to announce and publicly thank our sponsors who are helping to make this conference possible. Our premier sponsor is INADcure Foundation whose mission is to help find a cure for PLAN, one of the more common NBIA disorders. Our other sponsors are industry partners CoA Therapeutics Inc., Travere Therapeutics Inc., Chiesi USA Inc., and in-kind sponsor 4gen Digital who created our online conference merchandise shop.
Join us in connecting with the NBIA community and its supporters from around the world from the comfort of your own home. We can’t wait to see you!