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Join date: Mar 29, 2024
Posts (6)
Oct 13, 2024 ∙ 4 min
Family Updates October 13, 2024
Patient Registry Our international Patient Registry is LIVE through CoRDS . This is an important first step in gathering valuable data...
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Oct 13, 2024 ∙ 4 min
Family Updates February 2025
Hi everyone! I wanted to post some updates for the new year. Yes, I know it’s already February😅 Please forgive me, I got a new job,...
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Jun 9, 2024 ∙ 4 min
Family Updates June 8, 2024
Patient Registry We will be hosting our Patient Registry through CoRDS. CoRDS provides a secure way for participants to share their data...
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