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Week in Rare


  • KCNT1 EPILEPSY FOUNDATION USA (map)

Global Genes is on the move — Week in RARE is moving to Kansas City, Missouri in 2024.

Week in RARE combines the RARE Health Equity Forum and RARE Advocacy Summit, in addition to the RARE Champions of Hope awards ceremony and annual membership meetings for Global Advocacy Alliance and RARE Corporate Alliance. This is a unique opportunity to gather and engage rare disease advocates and leaders in the same space for conversation.

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September 17

Family Meeting - Pathway to Trials

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September 27

Blood Collection Day