Parents & Caregivers: We need YOUR help to take our research to the next level

The Foundation, in partnership with the University of Southhampton in the UK, made a full launch of the Global Patient Registry in 2022. Since then, only 35 registries have been completed with about 40 more started but incomplete. The more families we can get to complete it, the more insight it will offer researchers into PURA Syndrome. For more information and to register, please visit:

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