Nothing About Us Without Us: A Rare Disease Day Rundown

Rare Disease Day 2023

We were again thrilled to have the genetic, undiagnosed and rare disease community come together for Rare Disease Day 2023.  We facilitated a hybrid event – Nothing About Us, Without Us.  Our voices are often missing and as lived experience experts, we need to be heard. The event was in two halves with a morning of presentations – summarised briefly below and a workshop in the afternoon to explore the creation of a ‘grassroots’ network/alliance to allow our community to come together formally to contribute to or lead discussion or activities of significance for us.  The full recording of the morning is also available.

Read the summary      Rare Disease Day 2023 Summary

Watch the video          (92) GSNV Rare Disease Day 2023 “Nothing about us, without us” – YouTube

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