The Pilot ND Congress is a virtual event for the people most impacted by neurodegenerative diseases to share directly with people working on solutions in the ND space about what would improve their quality of life. This event kicks off the first of a three-part neurodegenerative disease summit, the ND Congress Series.

ND Congress Makeup Graphic

Part One: January Virtual Pilot

The series will begin with a two-day pilot virtual event in January with 30 participants, at least 51 percent made up of people living with ND and caregivers, and the rest professionals in government, health foundations and a range of industries pivotal to day-to-day services for them.

The pilot will set the tone for the next two events.

Kicking off a movement

Our goal is to kick off a movement driven from beginning to end by the firsthand experience of the people who these diseases impact every day, to set priorities for making real change in their quality of life—change that invites everyone with a stake in the results to be part of the solution.

Sharing knowledge, opinions and solutions

Throughout the two days, attendees will hear from people living with NDs and caregivers on the topics that have surfaced in the listening work Adira has done since launching in 2019:

  • The benefits of shared identity and multilateral models.
  • Priority setting led by the people most impacted by NDs.
  • Five key quality of life measures: confidence, money, time, energy and connection with others.
  • Health equity and care access.
  • Navigating the landscape of ND services.

Then, experts will lead interactive presentations on each topic.

In between and throughout, all participants will have many opportunities to share opinions and knowledge about:

  • What would most make life better?
  • What is already working?
  • What is missing?

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health equity grant award

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